October Vent/Hope thread

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Let's do a new one each month!

 

Vent- I was just so despairing this morning. it is so hard to be a mom who doesn't feel good, can't have a beer or sex or bleach my hair. (LOL I sound like a real hussy!!!)

 

Hope- I feel better mentally now! I called my sister and went over her house for an hour. I am starting to learn how to stop the negative spiral before it really gets going. Plus- it is an absolutely gorgeous day in Philly and I am wearing new pants. (tiny ones- one of the benefits of this limited diet)

SarahC's picture
SarahC

Vent! Am having a bit of a crap day. External irritation for first time in a while. Wondering if it was the couple of sips of coffee I had this afternoon. Gah. Will back off it for a while I think. Am still struggling with handling the advances and retreats.
 
Hope - have tried yoghurt and seem to be tolerating it fine, which is great news. And today was pretty good, up until about 6pm.

SarahC's picture
SarahC

ps deir on the sex, have you tried recently? Maybe worth trying very gently if you haven't - you may be surprised. Managing to have sex again really made me feel better about everything, and it's rare now that I feel I can't manage it.

Claire's picture
Claire

Vent: Agreed on the sex thing- I really miss it but had SUCH a bad time after having it a month and a half ago that I have not tried again.  It sometimes makes me feel inadequate, but the anxiety that comes with sex is just too much for me.  So exhausting. 
 
Hope: It was a really great day overall- I'm finally teaching art again after a year of not teaching and have just gotten a studio space for me to work in myself.  It feels AMAZING to be able to think about things other than IC all the time and I have such gratitude for the time that I am pain-free and functioning normally.

fahlmank's picture
fahlmank

Vent: It seems just as soon as I begin to get a handle on one bizarre malady another appears. This morning I woke up short of breath... I am having difficulty feeling as though I am getting enough oxygen in, but I don't feel light headed.. just kinda off. And frankly, I have just been kinda bummed about it... down in the dumps today and REALLY tired. I feel like screaming ENOUGH ALREADY!
Hope: My heart rate is making improvements and my bladder is doing beautifully. The bladder pain has always been the most uncomfortable and I am very thankful it has abated. Also, Dr.B put my up to 1.5 Bifido 4x per day and I seem to be tolerating it. I always get nervous when she changes my protocol.
I enjoy reading this blog. It is how I end my day each day... reading about all of "our" days and sending good thoughts everyone's way:)
 

SarahC's picture
SarahC

VENT - still haven't shaken off my bad run - slept through last night and felt fine this morning, then diarrhoea at 9ish set off all my burning! Gah!!!!
 
but HOPE - it's evening now in the UK and things have really calmed down. Feeling achey and a bit sore, but not all burny any more. Phew!

Christine222's picture
Christine222

Vent - Matia thought I was doing well enough to try probiotics without anything else to buffer them, she said it was a sign of good progress, well I wasn't able to handle them alone, my bladder was all pinchy! So now I am waiting for my siberian ginsing to arrive so I can start that, hopefully it will work well and not bother me.
 
Hope- I've noticed I am losing less and less hair in the shower now, so that must be a good sign. I did have a few good days again this past week so I really can't complain too much.

blondy's picture
blondy

Christine, I hope you tolerate your probiotic well. It works pretty good for me with Siberian. You are doing great and I am happy for you.

Christine222's picture
Christine222

Thanks! How have you been doing? How many Mega and Bif's are you taking with the Ginsing?

blondy's picture
blondy

I took 2 of each with 1 Ginseng cap x 3 times. I use Imperial Flexir ginseng, the same brand Matia sells at her office. It is excellent. I am on a modified protocol now, so I take less probiotics but more herbs.
 

soniafa's picture
soniafa

vent: it looks like the bifidos are too harsh yet and now I´m flaring... Matia said i need to back up, take them off and check.... :( ... I was planning to spend the afternoon doing some drawing but instead I´m in bed with an electric blanket and looking for stupid things on ebay... amazon and ebay are the evil when you are sick..!...
 
hope: vulvodynia, urethra burning and frequency are much much more better... this morning I felt basically 90% normal.... till 5pm... I was able to walk around and do stuff without worrying AT ALL about toilets for 3h.... amazing!

SarahC's picture
SarahC

VENT - still in my flare (which isn't even that bad, just got used to feeling better). Mailed Dr B yest and we agreed to trying upping my bif to 1/2 a capsule a dose. Seems to have helped a bit - less irritation today, more bif-like burning deep in my tissues, but I seem to get this when I up the probiotics so not too worried. We'll see - I want to get back to a good bit! Felt quite glum over weekend, but reminding myself that I'm only just coming up to five months of treatment so need to be a bit more patient!
 
HOPE - my skin seems suddenly better! Back MUCH less spotty, which I'm hoping is a good sign. Marvellously timed for winter, too ;) Also, this morning, had a great few pain-free hours and went for a lovely walk with my three-year-old. Sign of times ahead I hope! xxxx

deir's picture
deir

Vent-
I am still struggling mentally sometimes. Will I ever go out to eat? Will I ever just grab my husband and have sex without fear? I seriously need a vacation too....really bad.
 
Hope-
I think my hair has stopped shedding!
 
Sarah- Matia has said to me that the good periods will get longer and the bad shorter but they'll still be there for a while. Not sure if that helps. i hope you feel better soon.

Shelby's picture
Shelby

Hope- For the first time in a long time I have been flare free for 3 days in a row!  I am feeling good!  I am tolerating 6 bifido and 4 mega a day.  Will be starting the siberian in a couple of days when it arrives!  Hope this upswing lasts!  I'm happy, happy!

SarahC's picture
SarahC

Hey Shelby, that's great news!!
 
HOPE - after upping probiotics at the weekend, I had two really good days - especially yesterday. Took my son to a music session at the big music centre in my home town, chilled out at my dad's house (am up visiting) - all really lovely.
 
but VENT - out of nowhere and with no variation of food or whatever, am flaring again today. Urethra just there, and I had some urgency earlier on, which was not appreciated! Am on day 14 of cycle, though, so hoping it's ovulation. Feeling a bit mentally battered by the whole thing today though. The up and down is such a bummer: had that feeling this afternoon of, will I ever be able to relax and count on my health again?!!

soniafa's picture
soniafa

Yes Sarah,
 
This is so crazy, the same happens to me.... Each day is a different story, but we are learning to understand why we get worst, I guess .... although sometimes is just none sense... the positive side is if I look back I can see i'm improving a lot... so I accept what I get and I try to remember this too shall pass.
 
xx

Shelby's picture
Shelby

My worst time for flairing is ovulation and period time!  I am told that as we get better these periods of time will get better too! 

deir's picture
deir

Shelby! Great news!
Sarah- I laugh ahow alike we seem to be!
Hang in there!

SarahC's picture
SarahC

Hey, thanks everyone! oof, it's a bummer, this IC, isn't it?! totally with you deir - it's the head stuff that's tough! I can cope with all the physical wobbles - it's how it makes me feel in my head when I have bad days that's difficult - the anxiety that I won't ever get better. If someone said to me, "you'll feel like this for three years and then you'll feel better", I'd take that over "you might feel better next month ... or not ... " any day. The uncertainty's such a battle for me!
 
Am going to go reread some of dr b's posts and some success stories to give myself a boost! And again, am reminding myself that I'm super-early in treatment ...
 
Hope you're doing ok today, deir?

deir's picture
deir

Oh my god- that is me too Sarah!! It is the uncertainty that kills me. This is one of the aspects about this that I think will serve me well later. I think letting go of some control in life can be so so healthy. This is kind of a rough way to learn that lesson but, I'll take anything good out of this that I can.
 
Vent: Itching....yuck
 
Hope: Feeling overall better the past few days- not perfect but low level stable. ALso- my energy level has been so amazing this whole time. I think it is the diet and the lack of alcohol.

deir's picture
deir

Hope- Ok...knock on wood but I think I am having a good span. Since last Thursday I have only had 3 bad days. That's really good for me. And the bad days weren't that bad. She upped my bifido to 1- 3x and it seems to have helped!
 
Vent- I really miss hard exercising but I am still afraid because of all my weird muscle die off reactions. I am really feeling flabby.

SarahC's picture
SarahC

Hey deir, that's great! Keep us posted!
 
HOPE - had a great day friday, basically symptom-free. But VENT - less good yesterday - urethra lit up again. Feels like every time I have a BM it flares everything - nuts! Am away for work and chairing events at the festival where all this started last year, so psychologically a bit tough, being back here and still not being well. Will be glad to get back home tonight ...

Tommygurl's picture
Tommygurl

Vent...  I've just about had one of the worst colds in quite some time, caught by our son and his preschool buddies, we all got sick.  Dr. B had me stop taking the supplementsa few days ago and started me on Nature's Way Echinachea.  Then, on top of it, I was flaring due to taking a client out for lunch/not being able to stick to Diet 1 list.  Then, the ongoing diahrea/soft stools which flares up big time.
Hope...  After a sleeples Friday night, having lost my voice completely & deep chest congestion/ear pain, plus a fever...I am beginning to feel better w/ NO meds.  What scared me was that I thought I would end up getting so bad that I would have to take antibiotics and make the IC worse.  I 'm using the humidifier & vaporizer, garging salt water, decided to try and drink hot chamomile tea w/ a bit of honey (yay - no flare) and made homemade chicken soup.  Soup not too tasty BUT the warmth has helped tremendously....not to mention getting as much rest as possible.  I'm about 75% better.
Now if only I can finally get rid of this headache... naturally.  anyone use anything homepathically which helps with their headaches?  This is the 3rd in 1 week!  Waiting/toughing it out is no fun....
 

SarahC's picture
SarahC

Hey there, how's everyone doing??
 
HOPE - I've had a good few days. This seems to be the best bit of my cycle, and I've felt pretty good - a couple of days symptom free!
 
VENT - the only symptom I've been experiencing on my less-than-perfect days is vaginal - sort of itching in my vagina and I think in my cervix(!). Has anyone else had this?! Totally bearable but a bit irritating. Oh - and hair failing out again!!
 
Otherwise, am really enjoying a quiet bit. How's everyone else getting on?

SarahC's picture
SarahC

Hey Tinkerbell, just about to read my son a story so v quick but just wanted to say that is AWESOME. Those first few moments when you feel normal are nothing short of miraculous, I agree. Happy to report I've now had DAYS like that. Sucks when it comes back of course ;) - but so envouraging to find your body is capable of feeling that way.
 
And intersting you have the vaginal stuff too! Feels like mild thrush, to me. Speaking to Matia last week so I'll raise it, and try a bit of natural yoghurt meanwhle.
 
oh and HOPE again - I now totally have yoghurt back!!!

deir's picture
deir

Vent- Had my phone appointment last night and Dr B tolde me to stop eating potato chips and rice cakes. I am still onlist 1 with no spelt:( She said to wait until I have 2 good weeks before adding food. The most I've had is 4 good days. Ugh. I am about to get thinner. Never thought I'd be against that! LOL
Hope- I really do think I look good and healthier. I've always been pretty (yeah- I'm saying that) but in the past few years, I feel like I haven't looked good at all. I can't explain it but it just hasn't been health. Part of it is lack of sleep with kids and I am getting older but still it was hard to explain. So, people keep saying I look good and honestly when I look in the mirror- despite all of the struggle I have- I think so too most of the time. It is definitely something going on deep deep down, I do really truly feel that this treatment is going to be so good for me in so many ways. I am so grateful to have found Dr B.
 
Tinkerbell- how nice!
Sarah- you seem to be on the upswing! I am heading towards my i yr anniversary too and not looking forward to it. hard to believe this is real sometimes.
 

Tommygurl's picture
Tommygurl

I too snack on this... am curious as to why.

deir's picture
deir

Because she hates me and wants me to cry.  Just kidding!!
I have been very up and down and I was suspecting that maybe I was eating too many rice cakes in particular. I had a pretty good span for a few days with one bad day so she wants to see if it makes a difference before changing my protocol. With the chips she said sometimes in the processed form it affects your body differently than potatoes and olive oil on their own. SO complicated. I wouldn't worry about it for yourself unless you start to see reactions. I am so sick of list 1 so I think I was overdoing the crunchy things. Sigh...

fahlmank's picture
fahlmank

Deir, I feel for you! I have consumed so many of those darn chips my husband keeps teasing that we need to buy stock in them:) 
I can't remember how long ago you became ill with IC, but I will share that it took me around seven months for the inflammation to go down and I felt I turned a coroner with my bladder. I can only imagine how freaking tired you must be of diet one and I know you stay on it religiously. You will progress and I bet once you start progressing, you will do so quickly and without complications. 
It is not easy having little ones and doing this program. I truly believe lack of sleep is a true obstacle to healing. 
I am thinking of you and wishing you luck, 
Katie

soniafa's picture
soniafa

Deir, since I´ve cut out grains I am doing SO much better... Don´t worry if your diet is sad at the moment, is TEMPORARILY,  we will be able to reintroduce them, now just focus to lower the pain level. Check this post from Dr B:
 
http://www.icama.org/blog/mbrizman/2009/07/25/grains
 
I was eating tones of rice cakes because I was basically anxious in the office, but now I only have 1/2 half potato at breakfast-lunch-dinner or when I snack and the difference in vulvodynia is HUGE... grains increases inflammation and the gut is not happy. You´ll be fine!
 
xx

deir's picture
deir

Thanks but I am still really freaked out because when I went to CA- she thought I'd be eating list 2 in a few days. That was May 25. I am turning out to be worse than I thought. I am nursing a baby and very hungry.
 
I am so glad that you're feeling better though!!

soniafa's picture
soniafa

 I know you must feel very frustrated Deir but just think about al the things you CAN actually do...It could always be worst believe me... I repeat myself very often that I am lucky because this is “only” IC and I can fix this... I am 150% sure. ...Everything is going to be ok, sooner or later, but there is an end I promise. I know is difficult but you have to focus on the positive things you’ve got. Being grateful is a good exercise for the soul. I do that every morning, I make a list of 10-12 things I should be grateful for and I am amazed because everyday I find more and more stuff... I so easy to get discouraged...even for the smaller things. But we should make the most of this situation. I’m very happy to be learning how to be patient, first time ever!...  We take things for granted and we shouldn’t... This journey is challenging and it may be long but you are learning to care for your body in ways that most doctors do not know. You are working and you will get better, you are healing and heading towards wonderful health. The most important thing is to simply accept this is happening. Trust the process, trust the treatment and let go...
 
:)

deir's picture
deir

I hear ya' but I really don't take things for granted! I am so so grateful for so much in my life.  this is where i vent.I started the vent/hope thread for that very reason!
 
The advice to let go and trust is my biggest challenge. I suppose in a way worrying makes me feel like I have some control which of course isn't  true.It just robs you of your present.
 
Thanks for the pep talk. you're very caring

Willow's picture
Willow

And may I add, Hallellujah!
Lauren

SarahC's picture
SarahC

Hey deir - could just be that it's grains that are particualrly a problem for you. If you can stabilise by limiting them then possibly you'll be able to move up the lists in terms of veg and so forth quite quickly? I really hope so. I know how important rice cakes are! If it's of any interest, I can't seem to do potatoes at all, but have had no trouble adding yoghurt and, in the last few days, goats' cheese back in. Seems like potato is a trigger for me, and aubergine completely screwed up my bowels when I tried it - and I know they're both from the same vegetable family, which is clearly not something I'm much good at handling. Could just be that grains are the same for you?
 
HOPE - had basically a good week. Slightly more symptomatic today, but again not bladder stuff - weirdy cervical itching and an odd feeling in what I can only describe as the cavity of my pelvis - feels like someone's been sort of irritating the bones. How nuts is that?!
 
VENT - just that pelvic thing, really. Oh, and I have a great big under-the-skin spot on my nose! But not sure I can blame IC for that ;) (though actually it has made me alarmingly spotty, on my back at least, so perhaps I will :))

deir's picture
deir

Maybe but isn't it weird that I would suddenly be worse with them? I've eaten tons of rice cakes and potato chips through both good and bad days. I don't know.
 
I am curious to see if I will get even thinner from cutting out more carbs. I'm buying size 2 right now. If I get to 0 that will be really weird! I know I am just plain hungrier without the grains.

Christine222's picture
Christine222

Hope - My hair has basically stopped falling out. I have 10 long, hard fingernails, I have a normal bowl movement basically everyday. My skin looks great, well ok, it has always looked great but now I think it looks even better. I have no more issues with insomnia. My ears hardly ever ring anymore. Last week I had six days in a row of feeling basically normal.
 
Vent - Not much to complain about. I felt not so good yesterday and the day before but today is good again. I haven't tried anything on list 4, I've been to afraid, but I did order organic popcorn kernals so I will try that when it comes. To everyone out there who is still struggling, hang in there, it will get better!

researchnerd's picture
researchnerd

Hey Deir-
That hunger thing seriously sucks.  I know exactly what you're talking about with cutting out the grains.  I would search NatalieL, because she has a recipe on here for what she calls "trough".  She couldn't have grains or even salt!  Anyway, this is hella filling, I havent made it in awhile so I dont remember off hand exactly what it is, and its totally list one appropriate.
 
I would also make soup!  You can totally have home made chicken broth (Just get soup bones from the store or a butcher) and by themselves simmer for 2--4 hrs depending on the size of your pot. Crock pot is also good for this. Next, sautee celery, zucchini, squash, red and green cabbage.  When the broth is done, cook the chicken in it, for 15 minutes (meat that you bought separately), then throw in the veggies.
 
I know you're on the east coast, so this is AWESOME for this time of year.  I'm on list 3 and I still eat this exact soup only with onion.
 
 

deir's picture
deir

Thanks!! I am a total soup maker. I am very glad it is finally cool because I can eat that and enjoy it. My last batch had some spinach since I was trying that so I need to make a new batch.
Thanks!

blondy's picture
blondy

Thanks Researchnerd for your tips. I am starving withiout carbs, but they are surely not good for me.
Btw, if you cook soup, what water do you use?  

deir's picture
deir

I use Spring but I don't worry if it is any particular brand. Not sure if I should just be using Poland Spring which is what I drink. I do use quite a bit of water for it.

researchnerd's picture
researchnerd

Spring water.  Oooh another good recipe for list 2 is the spinach pancake one on here.  Also zucchini fritters!!
 
 

SarahC's picture
SarahC

Tinkerbell, I had the worst sore throat I think I've ever had after dr b added in goldenseal. We eventually twigged and took it out and it went! Also get a bit throaty when I up probiotics. So could totally be die off.
 
VENT am feeling utterly dreadful. Feverish, achey, shakey, sore thoat(!) - grim. And am looking after a three year old on my own today! not sure how we're going to get through to the night!! Suspect cold rather than die off, there's one going around. And also, a bit more bladdery again (can feel it even v early on - it's 7.30am here). But I guess combination of being ill and period due isn't a good one.
 
HOPE otherwise, have had a pretty good week. Bit of vaginal stuff and some faint urgency, but not too bad.

soniafa's picture
soniafa

Vent & Hope: I hate going backwards after 3 or 4 days of huge improvement. Going backwards means backing up 3 steps when I have advanced 4....this is quite extreme... So basically I’m moving 1 step steadily, slowly and gradually, every now and then... but the good news is I’m moving forward... I bless and hate these crazy peaks that make me just go nuts. Is crazy...!!. But I understand this is the way the body heals. Matia told me yesterday that IC does not disappear suddenly one morning... So is a gradual stabilization that our body does... Is funny because last night I was telling her that I was doing so much better with vulvodynia and pressure... Hilarious... this morning I woke up feeling gross again with vulvodynia and pressure..!!!...Irony of life... Why if I was doing so good for almost 1 week now I’m feeling rubbish again?? I know I just have to be patient and probably tomorrow I will feel better, but waking up in the morning and knowing that ur day will be crap, it makes things difficult... I want my life back... :'(... and I will!... I have reasons to be happy just know if I think of the progress... But I’m also upset with the diavolo IC dancing...grrr...I’d love to be stable so I can make plans again and not to worry anymore.. Patience... xx

SarahC's picture
SarahC

Hey all, just swinging through.
 
HOPE - My IC now seems to be tied v closely to my cycle. The best bit is between ovulation and my period. This month, I got to within a day of my period before my symptoms flared (and then only slightly). A definite improvement on last month! Got my period now and a bit more aware but really not bad. I've had a really decent couple of weeks- bit of vaginal irritation and faint urgency but nothing else really until yesterday when I could feel my urethra for a couple of hours again.
 
VENT - Feeling slightly less good now I have my period and braced for things to get worse over next couple of weeks until ovulation. And my stupid hair is falling out! But otherwise ... really doing pretty good at the minute (touching wood, crossing fingers, etc)

SarahC's picture
SarahC

Tinkerbell - ovulation is THE worst time for me. And the urge/frequency thing - I haven't had that for months, but it flared up for a day over ovulation last month. Totally freaked me, and of course noticed it much more as have been feeling so much better. So ... judging by my own experience, it could totally be that!

SarahC's picture
SarahC

The morning thing is THE hardest thing about this whole journey I think. Almost started a thread the other day asking does anyone else feel the morning gloom?? I HATE waking up and having to check to see how I feel, to see whether the day's going to be ok or not. I don't really start relaxing untll late morning. Do other people feel like this?!

Christine222's picture
Christine222

Mornings are always the best for me. I wake up symptom free, always! It's usually the afternoons that are worst.

SarahC's picture
SarahC

fahlmank - yes it's exactly that! My symptoms are at their best in the morning too - but it's the uncertainty I can't bear. If I have even a twinge in the morning I know it'l get worse as the day goes on. So I always feel nervous when I wake up, and it's such a mentally crap way to start the day. If I'm still ok by 11 I can figure the day will probably be ok, and I start to relax. But no matter how great I feel first thing, I still don't know what the day holds, so I feel glum!

deir's picture
deir

me too:(

SarahC's picture
SarahC

Hey there hopeful venters - how's everyone doing? Here's my latest
VENT: feeling less good again after my period. had some irritation yesterday and pain in labia/generally in that  area today. Not unbearable but definitely a hitch up from before my period. As ever, hard to grapple with that sense of going "backwards" again, and as usual, I find myself a bit sunk in negative thoughts: will I ever get fully better? how long will this flare last?
 
HOPE: it's hard to be objective about yourself (SO hard!) but even today (a "bad" day) I've had stretches where things have been calm/I haven't had pain/haven't been thinking about my bladder. As far as I can remember(!) this didn't used to be the case. And  - I have my appt tonight! Yay!