View Full Version : Healing with a Headache in the Pelvis
Hello to Everyone,
where do i begin? i am in a healing process. i want to share my experience with everyone because maybe it can help y"all also. i will start at the beginning.
a few weeks ago, i was in a flare. i was surfing this network website, i CANNOT EMPHASIZE ENOUGH HOW MUCH THIS I C NETWORK WEBSITE HAS IMPROVED MY LIFE. MERE WORDS WILL NEVER BE ENOUGH. MY HEALING PROCESS STARTED HERE.
an i c sister named Lauran mentioned Abigail Steidley in her post. i was curious, i went on Abigail's blog. there i learned about the book A Headache in the Pelvis. i ordered it on amazon and am following the advice in the book.
OVER THE LAST 2 OR 3 WEEKS MY SYMPTOMS HAVE GONE DOWN TO THEIR LOWEST POINT EVER SINCE THE ONSET OF MY IC THREE YEARS AGO.
BUT, it's not just the book. i want to share what i am doing here, it seems to be a combination of a lot of simple little things that all together are making a powerful therapy for me.
maybe what i say here can give y'all some pointers, we're all different, but can put bits and pieces of what helps each other into our own unique combination, and that can help spell: R-E-L-I-E-F.
THE BACKGROUND OF MY ILLNESS:
we're all so different, those of you who RECOGNIZE YOURSELVES in my experience, who say, "hey, i can relate, that's how it is for me, too," those are the ones who may most likely be able to get some good helping pointers from my story.
so, first, i want to share some background re: my condition, because not everyone will fit my pattern, and therefore, not everyone may feel that the stuff i,m doing now will help them. you know?
i came down with i'c out of the blue on Oct. 29, 2005. i freaked, big time.
i HATE urologists, i had lots of bladder issues as a child, was scoped and hospitalized and dialated, and the appearance of the i.c was a big disappointment and setback because i had been free and clear of bladder issues for years. so. dragged my feet, did alternative stuff for a couple months, got sicker and sicker, went down to 91 pounds, and finally my mom dragged me to a urologist. ok.
my doc. said to me when i first came in there i was the most severe case he'd ever seen. of pain. i couldnt stand up. i couldnt sit (still cant sit too much) i was doubled over. so . he started me on elmiron immediately.
then, here's the key: i had the cysto with hydro. after he scoped me, he came into the recovery room and said: cydney, your bladder looks beautiful, it's pink and clear and healthy looking. that;'s a good sign. but it's key, i think to my healing process now.
i did have white cells and trace of blood in my urine. so. six weekly dmso instills after the hydro and i was on the way to recovery. sort of. later added elavil and atarax.
i kept busy. I WAS IN AN ADVERSARIAL RELATIONSHIP WITH MY BODY. the symptoms were at a level i could live with. I PUSHED THROUGH WITH MY LIFE. i worked construction for Habitat for Humanity.
i took long road trips and went hiking. i worked weekly in a soup kitchen mopping, scrubbing, etc. i climbed up on roofs, shingled them, did rough framing, i was an apprentice carpenter. i swung a 22oz. hammer. the guys said: here comes lil cyd, the girl with the hammer bigger than herself!
i drove miles 2 or three times weekly to go folk dancing and attend synagogue and see my friends. sometimes i ended up crashing....
i felt that only by wearing myself out physically would i be exhausted enough to sleep, because, even with the elavil, which helps alot, my urgency is usually so bad at night, i can only fall asleep if i am totally worn out.
I WAS OUT TO PROVE I WOULD DOMINATE MY I.C. I PUSHED DOWN THE PAIN, I IGNORED MY BODY'S MESSAGES. I REFUSED TO LISTEN. so, my body talked LOUDER.....
i would like to make this like a blog. i cant write any more now. i will post and continue later or tomorrow. i really want to share my story because i think it can help someone.
befor i sign off today, let me just say the kernel of what i'm doing that is seeming so helpful, it's simple in words, simple to do, but not so easy. because it's hard to perceive ourselves and what our ILLNESS IS TRYING TO TELL US. yeah.
1. i stopped everything. almost. lucky me, i can afford to do that at this time.
2. deep breathing. i thought i'd need a coach. you dont need a coach. you dont even need a yoga class. deep breathing can be done anywhere. 5 minutes at a time is enough to stave off the pain, delay it, and reduce the intensity.
this is so simple i can't believe it's actually happening.
breathe in very slowly. hold it for a couple seconds, let it out slowly and ALL the WAy. do it all 10 times. takes a few minutes.
3. sleep. i am now sleeping 10 hours nightly. if i'm not sleeping during all that time, i lay in bed and read or write in my journal.
4. i stopped drinking so much water. ( i was drinking around 3 quarts a day.)
5. keep driving to a bare minimum. i am lucky to be able to not have to get in the car more than 3 times per week. i live in the country and i was driving everywhere constantly, well, it just got to be too much. that aint rocket science. so.
6. read the book, A Headache in the Pelvis, by david wise and rodney anderson, it's not a magic bullet, but, it is a HUGE EYE OPENER.
my whole perception of my ic has undergone a radical revolution because of this book.
many of the exercises in here are easy to do at home altho they clearly say you should go to a practitioner, the therapeutic method they developed is called the Stanford Protocol. if you go to a physical therapist trained in this method, they will train you to help yourself correctly at home. anyway, i,m doing this on my own right now, just the things that seem easy and feel good.
7. walking meditation. i cant do sitting meditation very well for obvious reasons. i cant sit comfortably. i do walking meditation when i walk my dog and in my back yard. more on this later. just walk, breathe deeply and slowly, try to clear your mind and pay attention to the world around you.
more later, i would like to blog my process here and if anyone is interested or has feedback, please add your experiences and ideas to this thread. thanks.
signing off, cyd
icnmgrjill
10-27-2008, 07:35 PM
Cyd,
I love this post.... I love the tips you're offering.... you came to the same conclusion that I did. I was pushing so badly through the pain that I really think that I was making myself so much worse. Once I gave myself permission to stop and rest, I really feel that I made the turn in the right direction... combined, as you said, with a bunch of small little things. Yes, it's amazing the power of a deep breath!!! It works wonders!!!!
Please keep going!! I'm sorry I missed this post earlier. It's a real GEM in my opinion!!!
Jill :)
Hello again, Y'all,
thank you, Jill, for your words of encouragement! and thanks also to the sisters who p.m.-ed me with their experiences and encouragement, as well.
when i started this thread, i thought to share anything that may help others, and i am receiving validation and encouragement myself!!! i think we are definitely on the right track here.
well, the initial elation of my discovery has past. as dr. wise says in the book, we dont want to over-celebrate too soon.
now that i've slowed down, i have more quiet time for that old acquaintance, anxiety, to float on in. oh, yeah. let's be patient. let's continue to pace ourselves.
it's a fine line between setting out a healing program for myself and sticking to it without overdoing it. nothing can be forced or pushed. i want to be well instantly. i know this process can take months, even months and then more months....
and now that i'm doing the stretching and deep breathing and such, on days when my pain does increase, regardless, i want to deny myself a tramadol or a little valium. like if i take a pill, i'm admitting defeat. yeah. that attitude is just, may i say, *** fill in the blank! so. if i need a pill, i can take one. that's why the doctor prescribed them. okay.
here's what i'm doing that's helping, and then more on state of mind.mind and body work together....
i'm home alot lately these days, as i said before, lucky me. i sleep as long as i need to. i get moving slowly. i always move around before i stretch. sometime in the morning, i do the tai chi, most days. this gets my deep breathing started without too much conscious effort.
re: tai chi: i really dont know what i'm doing. i learned tai chi short form years ago on a public tv program. there are many levels of tai chi. some gentle tai chi can be done in a chair. there are simple, quiet moves that are easy and gentle, but still powerful. it gets your blood flowing, deepens your breathing and the gestures and stances can stimulate different acupuncture points, no needles needed!
tai chi can be very powerful if done at a very, very slow speed. so, if you want to learn, anyone can do it at the level that's right for you, they have videos and classes everywhere. there is also Qi Gong (chi-gung) which i think is similar and good exercise for healing.
i do short form, it starts with the horse's mane and goes up to the needle on the ocean floor. those are the names of the moves, and i try to go as s l o w l y as p o s s i b l e, it's relaxing and gets my breathing going deeper.
when i first got sick with ic, the only thing i could do was tai chi. i couldnt even walk my dog around the block! i was in bad shape, but i could do bits and pieces of the tai chi and got out of bed just to do that. it helped me survive that initial six month illness.....
re: deep breathing:
i listened to abigail steidley's story on the computer. if you want to, google her to get her website, then click onto the page, "abigail's story", click on there and the interview comes up on the computer; i think mine came up on windows media. i laid down on the couch and listened to the entire interview. she talks about the power of deep breathing: i'll paraphrase:
when we have pain, we tense our muscles. our muscles get in a habit of staying tense, thus more pain... to deep breathe, we imagine the air going ALL THE WAY DOWN INTO THE PELVIS. ALLLL THE WAAAY DOWN, into our most deepest, quietest center. just imagining this can help you to do it.
tight muscles get less blood flow and less oxygen, so they are tired and hurt more and can't heal well. when we get our breath DOWN INTO OUR PELVIS, our muscles that are squeezing our bladders can start to relax, receive oxygen and blood, and start to heal.
when you breathe in, try to fill up your lungs in a sideways fashion, and try to fill out your back. hold the breath for a few seconds. when you let it out, REALLY LET IT OUT ALL THE WAY. let it out till you are so empty that you involuntarily take in a new breath. that starts the next cycle.
if you start to feel a little dizzy or anxious, you may not be getting all the CO2 out, that's all, or you may be trying too hard.
sometimes, i can't do it. i feel too stiff, tense, and like i am forcing. so, i do the walking around, i do a simple tai chi. simple exercises like toe touches or quiet reaching, stretching, etc will get the heart rate up a little and the breathing naturally gets deeper, that's how i do when i;m too tense. do it like that, don't force.
well, a bit on the mind:
hope is a healing force. i am reading HEALING AND THE MIND< by Bill Moyers.
interviews. it's good.
walking that tightrope, staying on that fine line of moderation, being patient, sticking to the healing activities without getting all compulsive about it, procrastinating my stretching and breathing because i'm not in the mood, but once we start to see some result, then we are more motivated to continue.
having better days and worse days, i'm not over analyzing it. see the long picture, there will be many ups and downs, setback days with pain when i need to take a pill, yucky nights where i'm popping up to pee, or rather try to squeak a drop out, up every 1-1/2 hours or so, and you know what? SO WHAT!
there will be setbacks, there will still be bad nights, but in general, the TREND is GOOD, the trend is HEALING.
a healing path is not linear. a human being is not linear. yes, we want to make progress, BUT the progress can only be glimpsed out of the corner of our eye, don't waste time looking straight at it.
FOCUS ON PROCESS. what's my body saying to me today? then go with that flow; that's all. THAT'S ALL.
so, thanks everyone, please add your comments and experience to this thread. i'll continue to post, the anxiety and setbacks as well as the good stuff. it's all process. next time, and i'll just mention it here before signing off:
i have a hypnotherapist. she made me a cd, it's about an hour long. she takes me down into deep relaxation. she's trained in it for IBS, but she altered the talk a bit to aim it at my bladder. i lay down and listen 3 times per week. usually i fall asleep, it doesnt matter, it still does you good even while you sleep. so, that's another pointer, and it's really helping, i think, more on that later....
peace to everyone, and happy days,
love!!!:hi:
cyd
aleet7
10-28-2008, 03:20 PM
Wow Cyd!
I'm going to try the deep breathing exercise. I'm home now too but I have 4 kids(one with autism, one with nerve deafness in both ears and a child on marching band and track and a very busy 8 year old football player). Although I'm home, I'm in and out of the car all day so I never have time to myself to rest and the car drives my bladder nuts from the motion of the engine! I'm doing PFT which has helped tremendously only after 3 sessions!
Thank you so much for sharing your experience with all of us!
Aleet7
hi, Aleet!
wow, in spite of it all, you are one busy mom!
have you tried the cushion? the cushion that they sell here on the ic network website. i put one of those in the car, it's a great shock absorber. really cuts down on the vibration. plus, with the channel in the middle, you dont make contact with your most sensitive spots.
take the cover off the cushion, and put a nice large pillowcase on it; keep the pillow case nice and slack so you can benefit from the channel.
yes, i can imagine, not much time(none at all!!) for you to fit in walking meditations, etc, right now!! i hope the deep breathing helps.
thank you for your feedback!
LOVE! cyd
oh!PS: what is PFT? thanks.
Healing the Headache in my Pelvis:
A "WOMAN'S DISEASE?" I THINK NOT!
Tuesday, November 4, 2008
Election Day
this blog is a diary of my healing process. i have interstitial cystitis.
at least, i have had interstitial cystitis over the past three years. as i'm recently researching my condition, i think i may actually be over the i.c. and now am suffering from what they maybe call: pfd, pelvic floor dysfunction.
the i.c, which is technically: inflammation of the bladder lining and wall, may actually be gone in my case, but the pain has remained. yes. nerves and muscles have long memory!
so, i got the book: A Headache in the Pelvis; it changed the way i view my illness, and i've seen lots of improvement since i started reading the book and following its advice.
A WOMAN"S DISEASE???
interstitial cystitis seems mostly to affect women. hmm. 90% women, 10% men, say the statistics. i wonder.
the book A HEADACHE IN THE PELVIS was written by men, one of whom, Dr. David Wise, suffered with: Whatchamacallititis for 22 years. hmm.
prostate? vulvodynia? prostatitis? ibs? proctalgia fugax? interstitial cystitis? levator ani syndrome? the constant burning urge to pee for years on end, morning noon and night??? with no signs of inflammation or infection??? OY! woe is me.
BROTHERS AND SISTERS, UNITE! THIS IS NO LONGER ABOUT ARE YOU A WOMAN OR ARE YOU A MAN!
THIS IS AN EQUAL OPPORTUNITY, ALL AROUND, HUMAN PROBLEM!
THE BITS AND PIECES OF OUR ANATOMY MAY BE A LITTLE BIT DIFFERENT, BUT WE ARE ALL SUFFERING IN THE SAME WAY.
this can be a real eye-opener, let me tell you.
as i read his book, a book originally written for men... i see myself on every single page. what really got me was this: he describes the constant burning and the urge to pee. oy, the story of my life.!!! but!
this can all be muscular. this can just be tired nerves firing away for no reason other than they are in a bad habit. our muscles are pinching the bladder. the urge to pee can come from the Outside! why is this such a big deal? i:ll explain:
when you get a diagnosis of interstitial cystitis, they will tell you : it's treatable, but there is no cure. NO CURE> forever, ever and ever, OY<
the pain is caused by urine leaking through the tiny holes in the mucous membrane lining the bladder, and inflaming the bladder wall. supposedly. yes, and initially, yes.
however, in some people, like me, the urologist scopes us, and (he sticks a little lighted periscope thingamajig up inside there and takes a good look around. if the bladder looks beat up inside, he can see that...) in some of us, the bladder looks fine inside.
so, the pain is coming perhaps from teeny tiny holes that he cant see. that's a possibility. OR, the inflammation is healing, or not bad enough to cause permanent obvious damage, BUT, the pain is coming from the chain reaction of the nerves and surrounding muscles.
it is still pain, trust me: >excruciating pain. oh, yes.
so. that pain may very well be being caused by the muscles and nerves surrounding the bladder and urethra. yeah.
so, all the protocol for ic: the elmiron and instills, all the cathing and antihistemines, why is none of that stuff working for some of us??? because the inflammation is no longer present.
(how many times have i run into my urologist, FLARING... when he checks my urine, it's ALWAYS CLEAR. not initially, no. when i first got sick, it had white cells and traces of blood. that's inflammation.
but subsequently, my samples are always clear, but I'M STILL FLARING. so, not knowing what else to do, i kept having instills. dmso, lots of them. then the elmiron mixture rescue instill. OW. they burned me up so badly, they actually made me feel worse... )
yeah. anybody else have a similar experience?
so, i now think we are perfect candidates for the Stanford Protocol, the method of physical therapy and deep relaxation that Drs Wise and Anderson layout in their book: A Headache in the Pelvis.
we can learn to relax and retrain our tense, tight, stuck-up pelvic muscles. we can learn to let go; it's not easy, BUT THIS IS CURABLE. LIKE, WE CAN REALLY HEAL.
faced with this possibility, this opportunity, i'll do whatever it takes for however long it takes. just learning some of these facts HELPED MY SYMPTOMS TO GO DOWN MORE THAN 50%
That's why he says so many people feel better just from reading the book. we are just so extremely surprised and relieved to hear we are Curable. that we can Heal, and we can do it Ourselves. thank you, 100 times THANK YOU!
well, that's what dr. wise has just told me in his book. i think ic may very well be curable. 50% of women with ic will experience spontaneous remission, and i bet for many of them: it Never Comes Back!!!
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About Me:
cydney robbins
born chicago, illinois. elementary schoolteacher for 13 years. volunteered: treekeeper for chicago park district; north park village nature center, restoration ecology work team; habitat for humanity, apprentice carpenter and roofer; mentor with HFH; sous-chef and scullery maid for Brother's Keeper soup kitchen; ESOL teacher, teaching English as a second language to adults.
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purpleviolet
11-04-2008, 10:15 AM
Dear cyd,
I read the book,too and even sent it to my brother who has IC symptoms (and diagnosed). Originally I thought mine was just due to infections followed by urethral dilations (that's what they did in the 70's) and I haven't been the same since. Even though I think that my bladder lining is deficient (else why would certain substances set it off - I remember the first time it hurt after drinking a beer shortly after a series of these stretches), since he has it, too, there must be some sort of genetic component and perhaps that component is auto-immune. BUT that book made me aware that definitely a pelvic floor dysfunction is part of the chain of events (else why would sex hurt hours later or a bm set a flare in motion). So I went to several pelvic therapists but they really did not help ... and I called Dr. Wise and he invited me down there but the thousands of dollars is steep to pay and I did not see in his latest book testimonials from women. My latest thought is to try and get a hold of one of those devices that beams rays that interfere with nerve signals but I have not done that yet. I am going to see a new urologist who is more holistic, soon. I do indeed agree with you and him that PFD is a major component for many people because they even describe pain outside the bladder (mine feels inside it and the urethra - like someone kicked me) I hope you can apply his technique and get lasting benefits. Are you planning to go to him? PV
aleet7
11-04-2008, 12:39 PM
Hi Cyd!
My hubby recently purchased me a pillow for the car. It helps a lot but I'm tall (5ft 8in) and I seem to sit really tall on the pillow. I'm going to PFT(Pelvic floor therapy). The therapist said that my pelvic floor muscles are so tight that they squeeze my bladder to protect it from the motion of the engine. I recently took my first 3 hour ride without pain last week!!!!! I can honestly tell the the therapy is helping. Mostly it helps with leakage, I can now make it to the bathroom w/o wetting myself and I think it helps with urgency too.
I can relate to flaring with clean urine! I've even seen blood with my flares and no UTI! At that point my doc looks at me like I have two heads( I wonder if he questions my pain)!
Best Wishes,
Aleet7
hi to purple and aleet!
yes, yesterday i spoke to Dr Wise on the phone! i felt like i was talking to an uncle. we had a nice chat.
no, i am not ready to go to california to take the intensive 6 day training seminar. it costs: $3950.00 and that's NOT including the airfare, hotel fee or meals or the urologist's eval. that they set you up for when you arrive. no. i'm not even done reading the book yet.
dr. Wise had a good suggestion: just put one foot in front of the other. we each need to go at our own pace.
my concern is: oy, i am so stiff and tight, i'm afraid that physical therapy will just be way too painful for me to even tolerate. that's my fear. listen, i cannot even get a gyn exam without starting to cry. it's NOT anxiety, it's PAIN> tampons??? a physical impossibility. but, anyway, there's hope because even doing some of this stuff from the book at home is helping me tremendously.
i will take some more time to finish the book. i also plan to really reach out right here on this amazing website. i'd like to hear from anyone who has gone to california and taken dr Wise's treatment, and also from anyone else who is considering it.
i would love to learn from the two of you: what do they do to you when you go for the physical therapy/pelvic floor therapy? i'm kind of scared of it! yeah. does it hurt? do they go inside? so i'm curious what exactly they do, and then, do they give you exercises to practice at home?
it makes sense, purple, what you said about the dilations. i also was dilated twice as a child. all the stuff we have had done to us, and all the cathing, that makes us unconsciously get tighter and tighter, like we're trying to protect ourselves. maybe.
all those treatments, altho they can help, and may be needed at the time, well, they have the ironic side effect of irritating our tissues, membranes, nerves and muscles more. thus the cycle....
i'm glad to hear you are getting such good results with the pft, aleet.
well, i'm just so grateful we can all come together like this because most everything that i've discovered that helps have come from all the sisters at this website. so well, we'll just continue on our journey here together!
thank you for your responses,
LOVE!!!
cyd
ps: the first polls are just coming in!!! this is sooo exciting!!!
systitis
11-05-2008, 12:52 AM
PFT is the single thing that helped my pain/freq most. The drugs either had side effects I couldn't tolerate or else they just plain didn't much work.
In answer to your questions about PT: First of all, make sure that your PT has been specifically trained in PFT. They work both internally & externally...in the external work, they use their fingers to massage/skin roll your thighs and belly. This is can be uncomfortable but not unbearable as the tension gradually releases.
They work internally by locating the "trigger points" in the pelvic muscles. This can be very painful depending on how stressed those muscles are. Using gloved fingers & lubricant, they go into your vagina to about the depth of an inch or so & gently stroke/massage the muscles. IME, gradually the pain diminished & then, disappeared. Over 6 months, my urethral pain & chronic pain on the right side of my pelvis completely disappeared. Also, my frequency diminished (I used to pee every 5/10 minutes, now it's every hour or so -- for me, amazing relief). The act of voiding also improved noticeably.
The PT will show you how to do the internal work yourself -- it's not at all difficult. The PTs trained in this work are sensitive and gentle...they are there to help you, not hurt you. It is important to be patient & persistent. PT is not a "quick fix."
PT is a slow process & there are plateaus where you don't seem to be getting anywhere. Over time, though, I found it very helpful. My PT also showed me how to use a TENS unit which was very helpful with pain...I bought one on Amazon for about $40 (didn't need an Rx)
Amy Stein, a PT who specializes in PFT, has written a book that offers a detailed explanation of PT & outlines ways you can do the techniques (including massage & internal work) on yourself. Her plan includes exercise, relaxation, simple nutrition advice. It's called "HEAL PELVIC PAIN" & you can get it on Amazon. It's clearly written and I found it very helpful.
Another interesting approach is hypnosis which, if I understand it correctly, is about relaxation. I posted an article yesterday about the use of hypnosis for various health issues. I have not tried it but plan to ask my uro during my next appt. here's the link to my post which contains the article: http://tinyurl.com/6ked68
Hope this answers your questions & helps at least a little.
Your approach makes a lot of sense to me. Good luck.
Hello Systitis,
wow, THANK YOU VERY MUCH for this detailed and helpful response!!!
here's my question for you: did you go to california for Dr Wise and Tim's treatment week and get your PFT physical therapy there? or can i find a practitioner elsewhere???
i'm wondering if there's a website with a directory of PT's and their specialties....
i think i may have just answered my own question: the APTA website, i put in my zip code and "women's health" as a specialty, and three came up. with phone numbers to call. computer age can be truly amazing.
thank you for recommending the book by Amy Stein. i will definitely get that. it'll be interesting to compare the techniques in there to the Headache in the Pelvis. so, wow!
i really appreciate your response; thanks a Million!
Love,
cyd
ps: i'm working with a hypnotherapist, too. deep relaxation is a big part of our healing program. all of this is helping.
systitis
11-06-2008, 03:45 AM
Hi Cyd....No, I didn't go to California. I live in New York City and worked with a PT here who is specially trained in PFT. I'm pretty sure there's a list of PFT-trained PTs right here on ICN...Perhaps you'll find a rec for someone in your area. If not, a call to the Uro or Women's Health dept of a local hospital might yield a referral.
So glad my post was a help. Don't hesitate to ask away if you have any other questions I might be able to answer.
To turn the tables: Has hypnosis helped? What exactly happens in a session? Do you need someone specially trained in IC?
hi again, Systitis!
yes, i think the hypnosis is helping. i work with a hypnotherapist. she has also become a good friend over time. for $95 per session, she usually gives me two whole hours!
i currently am going once every 2 or 3 weeks. there's no set schedule; if you even go once, and s/he makes you a cd, you can listen to that same cd at home over and over again, and it can keep helping you.
i dont think you need a hypnotist trained in i.c. mine is not, but most of them are trained to help people with chronic pain. yes. so, i would think any hypnotherapist would be qualified to help us.
like finding a psychotherapist, we need to find someone we feel comfortable with and can "click" with and trust.
the first hour we talk. i talk alot with her about emotional issues. that's like the psychotherapy part. as we talk, she will get an idea for what to focus on in the hypnosis session, which is the second hour.
my hypnotist is actually trained in IBS (helping people with irritable bowel syndrome).
but she changes the talk a little to aim it at my bladder.
i sit in a comfy chair. i lean back, and she starts talking. first she takes me down with gentle deep breaths, and she counts to five or ten while i breathe deeply. i get relaxed.
she then will do a little visualization story. like floating on a cloud or somethin. this last one she did for me had me relax every body part from head on down. then around the pelvis and bladder she talked extra, about relax, loosen, let go, and so on. i often fall asleep.
she talks into her computer and records the whole hour talk on a cd. i take it home, and currently, i have been listening every other day to this cd at home. lay down on the couch and just listen to her do the session.
so, that's it. and this kind of relaxation is part of the program dr. wise outlines in his book, Headache in the Pelvis. i think what i'm doing with my hypnotherapist is similar.
there is no swinging pendulum, and no, like loss of control on my part or anything. unless you want to do a regression. that's where they take you back to relive something fron your past or from your karma. if you believe in that. i don't rule it out.
i went back into a regression in my very first session, and it wasn't intentional. that was amazingly powerful because it clarified for me some emotional issue i was miserable over when i started to go to her. wow. i made a big leap of progress and understanding into my issues, and i felt much lighter after that.
AND i made progress and stopped repeating some old mistakes. that kind of emot. stuff may very well impact upon our ic and pain, so it's all connected and can help, that's why i dont rule it out.
well, that's it in some detail! ask away some more if you have any more questions!
thanks, and
LOVE!!!
cyd
ps: i got some names and numbers from the APTA.org website of pt's that specialize in women's health near me and will call to ask if they do PFT. YOURE an INVALUABLE RESOURCE< thank you very, very much!
puddle
11-07-2008, 08:41 AM
and just don't know how to give up. I've wondered so many times what it means to give up. How do you give up?
You just don't go to work tomorrow? Don't make breakfast? Don't get up?
I love my job, but cry all the way to work and all the way home because I hurt so bad. I'm so tired I can't sleep. I hurt so bad I can't think. I want to give up but I don't know how.
This is unbelievable. What do I do?
Puddle
SharonA
11-07-2008, 09:16 AM
Puddle...:welcome: to the IC Network...Never give up on yourself.
You have done the 1st thing to help yourself. You have found us and posted. You will find a lot of support here.
You did not say, but I am assuming you have been diagnosed with IC. It can be overwhelming that's for sure, but it is not impossible to get control of your symptoms. I have been where you are right now. I was in terrible pain when I went running to a Urologist with horrible symptoms and did not know what to do. I am glad to say that, today, I am doing well and able to live my life fully and happily.
What I did was find a doctor who understood the kind of pain that IC can cause a person. Upon my first visit with her, she put me on Elavil. The very next day after my first dose, I noticed a change. The pain was reduced and I felt a lot better. After a few months of learning what dosage works for me, I have been taking 25mg every evening for several years. It was what gave me my life back.
I also found this website and began reading. I was amazed at the number of medications/treatments that are available to us. I suggest that you do your own research on the information provided on this site. There is a lot and it can seem daunting, but it is so worth the time. You can find a lot of information in the Patient Handbook (link is in my signature notes).
I also began discovering what diet items trigger my pain. (You can find the link to the IC Diet in my signature, also.) The IC Diet really is the first line of defense against symptoms. It will seem like you have to give up so much of the things you are used to eating and drinking, but what you are really doing is giving up what causes pain, frequency, and urgency that usually comes with IC.
I totally understand that things look grim to you right now, but that does not have to be a permanent situation. Many people have found what helps them and live a good life despite IC. There is no reason to think that you will not be one of them once you get control over your symptoms.
There is hope and there is help. :):):)
hello darling Puddle:
Sharon is right!
i am so sorry you're suffering so. i know you are. like Sharon, i was there, too. i even would get in the car and drive myself out on the highway with the windows rolled up bawling my eyes out at the top of my lungs, i was in such pain, such deep despair, and i didnt want my neighbors to hear me crying.
Listen: Sharon is right: first priority is: YOU MUST GET THAT PAIN DOWN> AND YOU CAN! Elavil is a life saver.
also,ask your doctor for a sleeping pill. All that missed sleep makes everything worse and worse. things SEEM much worse to you right now than they really are, Puddle, I PROMISE>
drink lots of water. if you're drinking anything else at all right now, stop. no pop, coffee, tea, juice, ONLY WATER< and LOTS OF IT> try for 3 qt.s per day.
now, it's not all or nothing. Can you take a few days off of work? A week? if you get a sleeping pill from your doctor, take a week off of work, sleep as much as you can, go for an appt during that week to see a urologist, get your pain levels reduced, you will begin to feel like the wonderful human being you really truly are again, and things will begin to look up.
this suffering is temporary.
who do you have who can support you right now? husband? parent? sister? good friend?
Reach OUT!! none of us get thru this stuff alone!!! we're here on the boards, and we can give you good ideas, but! you may need someone to take you to the doctor, to help you make appointments, to feed your pets while you sleep, and so on.
whatever you need, no matter how large or small, Reach out to your friends and family for help.
Hope, Help, Sisterhood and Healing are in your near future.
Sincerely and love,
cyd
puddle
11-08-2008, 01:27 PM
I guess I sound overly dramatic! I feel a bit better now; I've had a nap.
Thank you for your kind words. I have been snooping around on this forum for a few months but haven't been able to sit long enough to chat.
Originally I went to the doctor for spotting. I had been bleeding a little every day for almost 2 years, plus terrible hotflashes and dryness. After he did all the scans he did a biopsy which hurt so bad I cussed out loud twice right in the doctors office. I was so embarrassed. That's when he said it was my bladder.
So he diagnosed me with IC in early August, but my doctor didn't do the scope test. He did a potassium test; but I didn't have a reaction to it. He gave me an instillation the next morning and I felt like a new person. The pain was gone. But it only lasted for while. I've had 14 instillations since then. He put me on elmiron and an antihistamine.
Then last Tuesday I was in so much pain I called from work to get another instillation but couldn't get in. By the time I voted, Tuesaday Nov. 4th, I thought I was going to die. I went to a night clinic where they tested my urine. The doctor said my urine was terrible, terrible terrible. After taking the Cipro I am feeling a lot better. So now I'm wondering if it could be possible that I've had a bladder infection all this time and the instillations were covering it up. Is that possible?
I'm praying it is a bladder infection. I feel very sore inside but the burning and horrible pain have subsided with the cipro. Have you heard of anyone having a long term bladder infection and not IC?
Thanks so much for being here.
Puddle
hi puddle!
ARGH! i just wrote you a nice reply, then had to refresh the page and log in again, and now... I LOST it! ohhhmmmm. okay.
first, i'm glad you're feeling somewhat better. next, i dont have answers to your questions because, your experience is different from mine. so, there are, i am sure, many others on this network website who have had a very similar experience as you. here's my advice:
when you log onto this support forum, you'll see on the front page, all the names of everyone who is currently online at that moment. look for the highlighted name. that's a monitor or support leader. i think, if you click on her name, you should be able to send her a message directly. ask her to read your post here at "healing with a headache in the pelvis" thread. ask her if she can direct you or put your post in a thread where people are discussing stories just like yours. she can probably do that.
when i first joined up and started posting here, i had trouble figuring out how to do it, how to log on, write a piece, how to get it to join onto the right Thread, etc. and all the monitors are very friendly and extremely helpful.
now, here's what i can think of to say re: your experience:
first, hm, i dont know, because in my experience, a doctor will be more likely to assume you have a urinary track infection at the start and put you on cipro right away.
that's what happened to me. then, when the cipro didn't clear it up, i got a second antibiotic. then when that didnt clear it up, well, that's when they started with all the diagnostic testing.
it's very possible that with this recent terribly painful flare-up that you just had, well, you very well could have had a uti. on top of your i.c. that's very common, i know.
now, also, re: instillations. i know many people go in for instillations on a schedule. for example, once a month, or maybe for 2 weekly treatments in the 2 weeks leading up to their period, or also, if you feel your symptoms gradually creeping up on you and worsening, that's also a time to go in for maybe a series of a few or several treatments in a row.
my urologist has many patients that do that; it kind of helps them like an insurance policy, and keeps the pain from escalating out of control. for many people, regular instills help them keep their i.c under control.
finally, if instills do help you, i also know it's possible to get the stuff you need to do it all at home by yourself. actually get the stuff and the catheters and do it for yourself. i know there are people on this network who can tell you all about that, too.
so, i'm so glad your'e feeling somewhat better and calmer, too.
it can be so very, very frustrating because the doctors can have such a hard time figuring out what's wrong with us. so we try this, we try that; we're not sure what's wrong, which can make us feel anxious and scared, and meantime, we're suffering and in pain.
so, i know. it's very hard.
hope all this is helpful.
take care, Puddle, and write back any time.
love, cyd
TO BE CURED, OR TO HEAL?
i'm reading a book by Bill Moyers, Healing and the Mind, copyright, 1993, the companion book to the pbs t.v series. the last chapter is an interview with Rachel Naomi Remen, M.D.
you can google her to get her fascinating website. she's one of the first doctors to pioneer the mind/body/spirit approach to caring and healing. she herself has suffered with Crohn's disease since she was 15 yrs. old.
she works with cancer patients, some of whom are terminal, in retreats and workshops to help them cope, heal, and/or find community. she's also written books which look very interesting.
**************************************************************
here are some quotes from her in this last chapter of Moyers' book:
Healing is different from curing.... healing is a process we're all involved in all the time. it's very close to the process of education. educare, the root of education, means: leading forth, wholeness, or integrity. Healing is also the leading forth of wholeness in people.
sometimes people heal physically, and they dont heal emotionally, or mentally, or spiritually. and sometimes people heal emotionally, and they dont heal physically.
people have been healing each other long before there were doctors....part of it is seeing and listening to each other and not offering solutions. nobody offers anybody solutions here. ...
everybody here is wounded.... All people are wounded, but the people who come here cant cover it up the way the rest of us do, thinking we're the only wounded people in the world, right.?
everybody has pain, everybody is wounded.... (since we) cant cover up our woundedness,... (we) can trust each other.... it's our woundedness that allows us to trust each other.... out of that trust we can begin to pay attention to our own wounds and to each other's wounds- and to heal and be healed.
it doesn't take the cancer(or the i.c., or the ibs, or the pfd, etc) away. IT TAKES THE FEAR AWAY(my emphasis).
And when the fear is taken away, people are empowered to deal with whatever they need to deal with and to seek and find meaning in ... their lives.....
*****************************************
Dr. Remen then talks about the isolation people who have an incurable disease can feel .... that sense of isolation, that loneliness, the feeling of being separated from the rest of the human race, she says, that can weaken people further..... then she says:
*************************************************
i'm not sure i have gotten rid of my loneliness, i,ve just invited a lot of people into it, to be there with me.... it's not what we do that makes a difference, but what we allow to happen.
***********************************************************
*****************************************************************
in my last post, i went on quite a bit about am i curable or not. yeah. well, even if i am, it's going to be quite a long while yet. months, or more and more months. so. so what.
To be cured, or to heal?
to heal or not to heal, that's the question.
hmm. to be cured or not??
"to heal" is in the active tense, "to be cured," passive. how telling.
curing is something our doctors or science can do for us. maybe, maybe not. BUT:
healing is something we can help do for each other, and also, each do for Ourselves. Healing comes from Within. we can All Heal. yes.
whether we can be cured or not... well, it may be possible, and sometimes, it,s just not within the realm of scientific possibility... so... whether we can be cured or not, can we still heal? YES.
healing is:
becoming whole, becoming the most or the best or the most complete and okay within ourselves that we can be.
to create for ourselves a whole life, a community, a feeling of wholeness. to adapt our activities, our work, to what we can do.
to find value in what we can do, to look at the world differently, to discover new opportunities in the universe of what we CAN do, rather than kvetch and crab and bemoan what we wish we could still do.
to achieve our potentials. never say never. yes. whether we are "cured" or not.
to be healed is separate from being cured. curing comes from science and the outside world.
healing comes from our reaching out to each other, not only for practical, real answers, and possible solutions, but also for that companionship and community that's so vital to human healing. and healing comes from within.
and whence the spirit goes, so follows the body. yes.
AN APPRECIATIVE SHOUT OUT TO SHARON A.
i want to take this moment to say how much i appreciate my editor on this network, Ms. Sharon A.
thank you, Sharon, for all the time you take to read over all my posts, looking them over carefully to make sure i'm always appropriate and constructive. i appreciate you so much. Also, anytime i have a question, your'e always there to respond.
this network runs as well as it does because Jill and all our monitors are so diligent, knowledgeable, firm, supportive, and affectionate.
from the very first moment i ever logged on here, i had questions about lots of things, and the monitors and mentors reached out to me, answering my questions, explaining how to post, even moving my post to a better thread where it fit in better, enabling me to get a helpful answer sooner. how welcoming, how helpful! and starting to reach out here can seem confusing and technical at first.
24-7, our monitors are on the job. no one here flies off out of control; no one is ever left for a moment to flounder alone in the dark. we have high standards here, and they are necessary for us to maintain this strong, free, openminded, and resourceful community that is so respectful, empathic, and truthful, as well.
i am very grateful for this website, our forum, all our monitors, and for you, Sharon, thanks!
love,
cyd in ocala.
kellymh
11-11-2008, 12:30 PM
Puddle,
When I get instills my dr. always checks before to make sure I don't have an infection, and sometimes after the instills from being catherized I have gotten an infection, I call and they check my urine, I live a hour from my uro so I go to my local hospital, they call in the order, and sometime I do. I also get the home uti kits to check and it they are positive I go in. If I am flaring for over a week I sometimes get my urine checked anyway. I sometimes think that my family dr. thinks I am crazy because I want my urine checked, he will say, its probably just your bladder flaring, but the peace of mind helps me. I start getting anxiety after a week of flaring and than it gets worse from tightening up my muscles. Good luck, I hope its an infection and that you don't have IC, but remember things will get better. I need to take alittle of my own advice, ha, ha!
Kelly
SharonA
11-12-2008, 04:01 AM
Thank you, Cyd...*blush...blush*
ethnograph
11-12-2008, 09:14 AM
TO BE CURED, OR TO HEAL?
i'm reading a book by Bill Moyers, Healing and the Mind, copyright, 1993, the companion book to the pbs t.v series. the last chapter is an interview with Rachel Naomi Remen, M.D.
you can google her to get her fascinating website. she's one of the first doctors to pioneer the mind/body/spirit approach to caring and healing. she herself has suffered with Crohn's disease since she was 15 yrs. old.
she works with cancer patients, some of whom are terminal, in retreats and workshops to help them cope, heal, and/or find community. she's also written books which look very interesting.
**************************************************************
here are some quotes from her in this last chapter of Moyers' book:
Healing is different from curing.... healing is a process we're all involved in all the time. it's very close to the process of education. educare, the root of education, means: leading forth, wholeness, or integrity. Healing is also the leading forth of wholeness in people.
sometimes people heal physically, and they dont heal emotionally, or mentally, or spiritually. and sometimes people heal emotionally, and they dont heal physically.
people have been healing each other long before there were doctors....part of it is seeing and listening to each other and not offering solutions. nobody offers anybody solutions here. ...
everybody here is wounded.... All people are wounded, but the people who come here cant cover it up the way the rest of us do, thinking we're the only wounded people in the world, right.?
everybody has pain, everybody is wounded.... (since we) cant cover up our woundedness,... (we) can trust each other.... it's our woundedness that allows us to trust each other.... out of that trust we can begin to pay attention to our own wounds and to each other's wounds- and to heal and be healed.
it doesn't take the cancer(or the i.c., or the ibs, or the pfd, etc) away. IT TAKES THE FEAR AWAY(my emphasis).
And when the fear is taken away, people are empowered to deal with whatever they need to deal with and to seek and find meaning in ... their lives.....
*****************************************
Dr. Remen then talks about the isolation people who have an incurable disease can feel .... that sense of isolation, that loneliness, the feeling of being separated from the rest of the human race, she says, that can weaken people further..... then she says:
*************************************************
i'm not sure i have gotten rid of my loneliness, i,ve just invited a lot of people into it, to be there with me.... it's not what we do that makes a difference, but what we allow to happen.
***********************************************************
*****************************************************************
in my last post, i went on quite a bit about am i curable or not. yeah. well, even if i am, it's going to be quite a long while yet. months, or more and more months. so. so what.
To be cured, or to heal?
to heal or not to heal, that's the question.
hmm. to be cured or not??
"to heal" is in the active tense, "to be cured," passive. how telling.
curing is something our doctors or science can do for us. maybe, maybe not. BUT:
healing is something we can help do for each other, and also, each do for Ourselves. Healing comes from Within. we can All Heal. yes.
whether we can be cured or not... well, it may be possible, and sometimes, it,s just not within the realm of scientific possibility... so... whether we can be cured or not, can we still heal? YES.
healing is:
becoming whole, becoming the most or the best or the most complete and okay within ourselves that we can be.
to create for ourselves a whole life, a community, a feeling of wholeness. to adapt our activities, our work, to what we can do.
to find value in what we can do, to look at the world differently, to discover new opportunities in the universe of what we CAN do, rather than kvetch and crab and bemoan what we wish we could still do.
to achieve our potentials. never say never. yes. whether we are "cured" or not.
to be healed is separate from being cured. curing comes from science and the outside world.
healing comes from our reaching out to each other, not only for practical, real answers, and possible solutions, but also for that companionship and community that's so vital to human healing. and healing comes from within.
and whence the spirit goes, so follows the body. yes.
Cyd,
Thank you so much for this inspiring and thoughtful post!
Linda
sweeping satori 11/18/8
here's an old story, i read it somewhere, cant remember where:
there once was a zen master who had 3 very dedicated, devoted disciples. they earnestly practiced their disciplines, doted on their master's every word and gesture, and each one strove hard daily at their practice, thirsting hungrily for the moment when they would achieve...: satori (enlightenment).
one day, they gathered at the temple for their daily lesson and decided to ask their master for some feedback. first, went the disciple who walked on hot coals, "oh, master, please, how am i doing? i can walk on hot coals, and i only feel the burning a tiny bit! how much longer till i achieve satori???
the master turned his peaceful gaze upon his first disciple, saying nothing.
after a long pause, the second disciple cleared his throat, politely, and approached the master, bowing before him. "oh, master, what about me? my yoga is so advanced, i can turn myself into a pretzel standing on my head and stay that way without food or drink for 7 days and nights! please tell me, master, am i making good progress? how much longer???"
the master opened his eyes and smiled at his disciple. he said nothing.
after another long pause, the third disciple bowed, prostrated himself, and crawled up to his master, caressing and kissing his bare, bony feet. "my beloved master," he whispered,
"i have practiced and practiced sitting meditation till i can stay motionless for 3 weeks at a time, my heart rate and blood flow slowing to a snail's pace, indeed, i think i have achieved the deepest relaxation; i've invented human hibernation! please, master, i'm begging you! how am i doing?? how much longer till i achieve... satori?!"
the master opened his eyes, reached out, and placed his hand on the third disciple's head.
all three waited breathlessly for the master's answer, just even the tiniest pearl of his ancient, true wisdom.
during this whole time, carefully and slowly puttering about the temple, was the young temple janitor. he swept the temple, he laid wood for the fire, he dusted the altar, he brought water to wash the master's feet. these were but a few of the tasks he did daily, day in and day out, week after week, for months and months until they stretched out into years... he was the temple sweeper. daily, he swept. now and then, he whistled, ever so softly, while he worked. his attitude was slow and peaceful, focussed and calm....
"oh, master!" cried the 3 disciples, in their frustration and desperation for a little feedback, "come on, already! tell us! which one of us will achieve satori first???"
slowly, the master turned his eyes to rest upon the sweeper. he simply sat there and watched. he watched for a long time as the janitor swept, dusted, picked up soot, and carried water and wood.
the disciples followed their master's gaze, and they got their answer.
********************************************************************** *
i thought of this story the other day while i swept the pine needles off the driveway. yeah. i'm in pain. it hurts. i'm trying to let go. i'm making progress, at least if i slow down and rest more, my pain is much less than it was before. but it's not like i feel well.
so, i swept. counted the strokes of the broom. slowed down my breathing to follow the counts. it's a slow fix. and if i get frustrated or too goal oriented, then i tense against the pain, and it instantly increases. it's like moving around inside a vice. yeah.
MIND OVER MATTER?
NO.
as i continue with my posts and my process, i want to make something really crystal clear:
there's a big difference between what i'm doing here, which is a mind-body wholistic approach, and "mind over matter." i am NOT doing mind over matter. mind over matter is the yogi or shaman who walks on hot coals and feels no pain. uh, no thanks, not for me.
we have pain. and until we get our pain levels down to something we can tolerate so we can function, none of this stuff i'm doing now or writing about is appropriate. so. i take elavil. i have tramadol. i have valium in the house. yes. i don't do mind over matter. no.
we each have a threshold. i have found it possible, over the years, to learn to notice when i;m approaching a threshold, for example, of no return. like: OW> my pain is starting to revv up.
now and then, i have to pee so bad, and not one drop will come out. then, i know i am really, really over tired. i cannt stand it. so. i take a little something. because i know now when i really need it. and i now also really know what i have to STOP DOING so i'm not as Likely to GET to That POINT> yeah, important lesson.
so, i now know what i can't do right now. can't drive so much. can't run and do and dance so much, or hammer, carry toddlers, or sit in a chair for too long at a stretch, or bake cookies for parties, etc, etc... so, for NOW.
i tell myself, for NOW, i'm not doing so much. i have to do other stuff instead. like walking meditation, teaching English, deep breathing, lots of rest, standing at the computer instead of sitting, and staying home alot more. so, okay. it's not forever. just for awhile, yeah. much easier to take it: one day at a time.
now that my pain is more under control, i take a pill now and then, maybe once or twice per week. or more if it's around the time of my cycle or ovulation. when i have a cycle. (perimenopause.) so, when i say i can get my pain down with deep breathing, and i sometimes can, those are on the good days.
still, i'm making progress. everyone i talk to says, this is a slow fix. slow and steady wins the race. six months, or more.... and hopefully, the improvements, when they come slowly, will be more lasting.
kind of like i,ve heard love is s'posed to be....
so, peace to everyone, and may we all attain satori:pray: in the very best and most natural way possible:
by accident,:pray: unintentionally, while we heal! :pray:
******************************************************
aleet7
11-18-2008, 08:35 AM
Cyd,
great story! I also appreciate you explaining that for now you do what you can until you can do what you want to do! That is where I am. Sometimes I do what I want to while on pain meds and I alway feel worse afterwards! For some time I've been doing the things I used to do before IC and I feel like I'm set back because I'm in pain while doing it. No one understands(old friends) that I don't keep house like I used to or exercise like I used to because it hurts too bad. But that's ok. I've learned to only do what I can and what I can't I don't worry about because I realize my limitations. My prayer is that this is only temporary!
Best Wishes,
Aleet7
a little sample healing schedule tues. nove 25
here's a little schedule.
i think bits or pieces of it, as much as we have time for, any little bit of this is helpful. although i dont think you have to do all of these every day to see some results, if it's possible, it's a good idea.
also, whichever you choose to do, the general order is recommended: gentle aerobic exercise before stretching for example, hot shower after everything else or just before relaxation time. all the walking and deep breathing are excellent and helpful in and of themselves.
1 gentle aerobic exercise:
tai chi or some other gentle aerobic movement that will get deep breathing started naturally. start with 5 minutes or so, increase as you progress. i do tai chi in the morning slowly for maybe 15-20 min. sometimes less. follow this with 5-10 min of walking meditation:
2 walking meditation:
i find this so natural and easy. much easier than sitting meditation.
walk slowly back and forth. outside is good. even in winter. bundle up, and set yourself a pace that is rhythmic and relaxed.
to do this and pace myself, i like to imagine 2 beats for each step. the first beat is when you reach your right leg out to step forward. the second beat goes with either the sinking of your weight into the right foot, or the gentle dragging of your left foot to meet the right. then step forward on the left on one again.
pay attention to the sensation of the ground under your feet. feel the weight shifts. breathe. you can time your breathing to your steps, or you dont have to.
you can put your hands on your back at your waist when first starting out to be aware of breathing deeply. try to fill your lungs up sideways and to the back. if youre bundled up and walking out in winter, dont bother with that. dress in layers. you may need to peel or unzip as you walk and warm up a little. dont oversweat.
why i need to do this outdoors is because i do what i call listening meditation. i focus on the now, breathe deeply, walk slowly and rhythmically, and i listen. i let all sounds flow thruogh my ears without trying to name them. birdsong, wind, carhorns, trains, dogs barking, the wheels of a passing vehicle. i look up. at the trees, buildings, at the sky. whatever thoughts enter your mind, notice them, touch them with your mind, then bring your focus back to the present moment, and listen some more.
3 momentary relaxation:
while i,m walking, i imagine dropping the pelvic floor. dr. wise is right, it's not hard to do! let it feel soft and loose. try to let go between your legs. this may be hard for those of us that experience leakage. my problem is the opposite. so i need to let go if i can ever hope to be able to pee like a normal person again. without all that squeezing and forcing. ow.
just be patient. any voices that go thru your head such as what i'm hearing in my head now: "oh, what a bore, this is so dumb, this will never work, sigh, and so on,,,," yeah, yeah, let all those voices preach away. say, "uh-huh, so there y'all are again, Voices of Discouragement, i see you're here."
then, go back to listening to sounds around you. dont fight the voices, dont get mad. they will do their thing, trying to annoy you and demand your attention. take a slow deep breath. let them do their thing, even in the background, just let them be there, and like a spoiled brat, when you ignore them long enough, they'll get bored and go away. it really works.
*a note about momentary relaxation, or learning to momentarily relax or drop or loosen the tense muscles of our pelvic floor:
(dr. wise recommends wearing a timer that goes off every hour or every ten minutes or so, and whatever you are doing, just take 2 seconds to think about momentarily letting go of those tense pelvic muscles. we're trying to retrain them here, to relax them. one could even do this at work, but you'd have to get into the habit.)
4 dog walking:
so, back to the schedule: after 5-10 minutes of walking meditation, you may enjoy it so much you decide to do more. i will then usually walk the dog. walking my dog is a big part of my healing program. i enjoy his company. unless he's pulling on the leash.
sometimes, i have to skip walking him because sometimes my urgency is just too bad, and when he pulls even a little on the leash, i just cant stand it. it pushes me over the edge. in the past, i would persist, but now i have a higher standard.
here's how i get around that problem: i walk him around the block, go in and use the bathroom, then go around the block again. sometimes i have to do that. it keeps me relaxed. and we dont want to tense up. that's the whole tension cycle we're trying to break.
5 stretching:
after walking, i stretch. lay on the floor and do the leg stretches and such. do a few yoga moves. do not push and do not force. just stretch gently.
6 hot shower:
after stretching, it feels good to take a hot shower.
7 rest and relax:
then lay down. i put on a relaxation tape. let the pelvic floor drop. just imagine something dropping out of you. dont try too hard. just try gently. use your mind, and your cramped belly will start to release a little bit. that's good progress. if you get no result at first, do not give up. it will suddenly occur. like riding a bicycle. that's dr. wise's analogy.
8 a mini schedule:
i'm finding if i take even 10 or 15 minutes to do any one of the above activities, it relaxes my whole body, enables me to drop my pelvic floor just a little for tiny seconds at a time, and i can actually feel the pain level, tension, cramping, and even the horrible urgency jack down.
i do it when i'm in the car and that driving vibration starts to revv me up a little bit; i can feel my muscles tensing to protect against the jiggly feeling that makes me have to pee.... i start to breathe very slowly and deeply while i'm driving, and consciously try to relax the tensing.
i recommend taking 10-15 min., 2 or 3 times a day, if you possibly can. every few hours, take even a few minutes to do deep breathing. this really works.
slacking off:
so , it seems like a lot to do. and boring. this week i slacked off. i skipped my tai chi and my lil routine. i skipped a few days. guess what? i had some sleepless nights. oy, i had to pee all night long. hmm. so i got up and walked around and did deep breathing.
would i have preferred to have done that during the day, rather than in the middle of the night?. maybe i can remember that in the near future.
peace to everybody,
and a wonderful thanksgiving to y'all,:pray:
cyd
tangerine3
11-28-2008, 04:03 AM
Cyd! the information about the book "headache in the pelvis" I think it is going to help me so much. I found the website www.pelvicpain.com and started to read all about the stanford protocol. I will have to finish reading about it more and saved the site to my desktop. I have always thought that my PFD was way worse than my IC (i know it's related) and now believe I can continue to get better after I order this book. I have always been tense. Even just brushing my teeth I have to really pay attention and i can catch myself being tense. I have no idea when this started. Then it got worse I know after our son became a quadrapeligic and me and his dad are pretty much his total caregivers. It has been 5 years now so the routine is down but still hard work at times. I am lucky I too have time at home and now will have to make more time for me. We also have our own business. . . and on and on. I have had a prescription for Ativan for anxiety for years but too was like I don't want to take a pill, unfortunately maybe I should have and it might not have gotten this worse. Even though Ativan is not a muscle relaxer it does relax your mind and you can let things go and then your body is not so tense. I did start taking 1/4 of one every night before bed though after IC diagnose and it helps me sleep through the night instead of waking up at 3 or 4pm with my mind spinning about all the things that I have to get done. That helped alot and no after effects in the morning at all.
Anyway this one great piece of information you gave gives me even more hope.
My Dr. (urologist) that diagnosed my IC 09/08 has moved and I have an appt with a new Dr. in january that I also found out is more geared to PFD so that is a good thing. I was hesitant to try PT (mainly because of cost). But now when I go see this new Dr. I will at least know what he is talking about and maybe can at least go to one or two PT sessions to find out how to do it at home.
Does the book have the stretches and PT that you can do at home in it?
thanks again. see ya
Hello Tangerine 3:
i'm so glad you find the info here helpful.
you know, sometimes i say, like you, oy, i am so tense, etc,,, but you know what??? we are only human. yes. everyone holds tension somewhere in our bodies. everyone has some sore spots. that's part of being alive! and everyone has stress. of course. some more than others...
dr. wise talks about it in the book, he says, we may be predisposed to hold our tension in certain body parts. so. for us, right now, that body part is the pelvis. and i dont know about you, but my lower back has been annoying me quite a lot too. like it's a full circle sometimes, all around that area. slow. deep. breaths....
just being aware of it, while we brush our teeth, for example, or, for me, i often notice it in the kitchen while cooking or baking, i dont FEEL tense, i'm not Rushing, but then i notice, my pelvis is Gripping!!! so, yes, mee too, as if the default setting on my pelvic muscles is: tight, hold, taut, etc...
so at that moment, that we realize we are doing it, that's the moment we can take a slow deep breath and just imagine: letting go. can you drop that tense feeling for even a split second? that's good progress. that can really jack down the pain. for real. i am not kidding.
yes! that book A Headache in the Pelvis, has drawings in it, it spells out Everything, and shows the stretches to do... shows how to lean against a tennis ball, and explains it All. i also ordered Heal Pelvic Pain, by Amy Stein, which another sister on this thread recommended. that will come in the mail soon.
you have a lot on your plate, Tangerine!
maybe, setting aside some time each day for some quiet rest and stretching, like maybe even 15 minutes 2 X per day, that might be possible for you.
what we sometimes need to do is define what we have going on: like, wow, i have this pain going on, and it deserves my full attention, and this 15 min. period is sacred. like try to set it aside and not cheat yourself out of a little bit of time and attention that you deserve. easy for me to say. but! maybe some kind of approach like that could work for you.
i hope so, take care, and happy holidays,
LOVE,
cyd
systitis
11-29-2008, 07:04 AM
Dear Tangerine 3: I'm the one who recced HEAL PELVIC PAIN. The author (Amy Stein) is a physical therapist & in her book she gives the details for her method of relieving pain/symptoms. She includes detailed instructions for a series of stretches & tells you how to do internal & external massage -- all with the goal of helping de-stress pelvic muscles. Her book is well written, the exercises are clearly explained (with photos)....a very valuable resource for an approach that you can do yourself at home.
Cyd: PLMK what you think of the book. The approach fits in very well with your own ideas & I hope will add to your healing process.
aleet7
12-01-2008, 11:56 AM
Cyd,
I love your sample healing schedule! I never thought about everyone holding tension somewhere in their bodies! I know for sure that my tension is in my pelvic area! After 4 hard labors and level three vaginal tears, I know that my tension is horrible! As I was reading your post I could feel myself gripping and tensing up. I immediately tried to release the tension. I know you won't mind if I adopt your schedule!:-)
Best Wishes!
Aleet7
tues., dec. 2, 2008
LISTENING TO OUR INNER HEALER:
LEARNING TO SAY NO.
walking a healing path means learning to say no. to ourselves as well as to others.
for example, i'm teaching an ESOL class. that's english as a second language to a class of 5 lovely ladies, from puerto rico, colombia, and korea. i'm volunteering, and i love it.
i'm so grateful to have this work right now since it's so physically easy. it's only two mornings a week, with very little preparation. and since i'm already a teacher, it's like fallin off a log, and... gee, no heavy lifting!
not exactly putting on roofs like i was doing before. or teaching elementary school, with a roomful of 25-30 tender, noisy, and creative, young squirrels to engage every moment and nurture! oy, can that wear me out, or what?!?
but! i,m already finding ways to overdo... like i'm coming in a half hour early and staying a half hour late so i can work with my students one on one and give them some conversation, intensivo... ok, so okay, not a big deal. but! i've created a slippery slope for myself! gee, i'm talented that way. i always start to see how i can do more, and then i start thinking i should....
one of my students approached me. she wants private lessons. i told her i'd think it over. i didnt know how to say no. thinking it over, i began to get very anxious. that's my inner healer trying to speak up: Just say No, cyd, it's easy, it's even the same in spanish, listen: NO> no! no.
of course i'll say no. i dont need any more commitments. no more in my schedule, i cant add more to my schedule if i want to get the rest i need to heal. i will say no.
next, i was fooling around with this 'blog.' i thought it would be cool to get on a real blog thing and make a real blog, out there in the world. i've seen some sweet and beautiful garden blogs and thought it would be fun to try. well, i tried. i tried putting this blog onto a blog spot website. how cool, with colors and photos, etc.
well, it was not cool, and it was NOT FUN. it was frustrating and stressful. i fiddled and fiddled to figure out how to get a picture of my dog up there. then, when the blog spontaneously deleted parts of itself without my instruction, (uh, i did not press backspace or delete,) i decided, fine! good! Be THAT Way! good idea! time to delete the whole thing! argh!!
well, forget that idea! i was stressing myself out! how NOT what i want to be doing right now!.
so, i told myself : No. no, cyd, ya dont need to be doing this fancy blog stuff at this time, or probably, ever. no biggie. let it go!
slow deep breaths. ohmmm. so, i am content with my ic network post/blog where it's so easy to post and communicate. thank you to Jill and everyone who works on this site, it's very user friendly and so easy to navigate.
the lesson of today is: be vigilant. there is always something interesting sneaking around the corner egging me on to say yes to. think it over very carefully. consult the inner healer. some people call that the higher self. some people call it G-d, and they pray for guidance. whatever works.
one more thing. sometimes i think all this is just so self-absorbed. like here i am on my healing journey, so the flip what, who cares. yeah. and having to stay home so much and pull back. like with my mentoring; i just dont have the energy, but i kind of feel bad.
well, my mom put it very well. when i said, "gee, i'm so into myself lately, what a bore," she responded: "well, honey, if ya dont get into yourself now, guess what? there wont be any self left for ya to get into, and you sure wont be any good to anybody then, now will ya?"
good point.
peace to everybody.
love,
cyd
hello Aleet!
hi again, and i'm so glad that this stuff is helpful to you.
yes, i'm finding that even imagining letting go of the tension, even if it seems like it's not working, it's still working. this is hard to put into words.
but, like the intention puts the action into focus, and soon, little by little, the tense muscles start relaxing. it's tricky because our bodies, our pelvic areas have grown tense involuntarily. but just because it's been involuntary does not mean we cant now voluntarily release the tension.
i think of it as a snowball rolling downhill, like in one of those old cartoons.
we start the rolling process with our intention to realease. we get a tiny bit of release for a brief moment. but, by keeping at it, and doing this when we think of it during our day, each tiny moment we get of release piles up a bit, like snowflaakes on a snowball,
soon, the snowball is heavy enough to roll down with its own momentum., soon, our muscles can get into a little habit of relaxing, taking on their own momentum.
it's a slow process, but i think it really works!
carry on, Aleet! we'll carry on together!
best wishes to you, too,
for a happy day and sweet week ahead,
and thank you for your feedback!
keep in touch,
cyd
hi again, Systitis!
yes, thank you so much for recommending Amy stein's book. it will arrive in the mail; i ordered it on Amazon.
it sounds like it will fit in perfectly with all that i'm doing; also, the pictures in Headache in the Pelvis are not all too easy to figure out, like exactly what are they showing there,? it's not very clear, the female pictures especially. so! if she has photos, plus her book is more geared to a woman's body, i know it will be very valuable.
i'm making good progress here and am very optimistic.
thanks, and keep in touch; happy holiday time,
love, cyd
april ryan
12-09-2008, 02:26 AM
Thanks Cyd for your post. A HUGE thanks. I have ordered the book too and started if and you are right, it DOES make sense. My symptoms decreased too just in reading it.
A big part of all this is fear I think. Just the fact that with this approach we are not "doomed" to a lifelong illness makes us more relaxed and lower the pain.
Either we concentrate to solve this tension, that for sure helps and might solve the problem, or we just surrender to a lifetime of IC. I see it this way.
My pelvic floor is tense 24/7 and this MUST be a problem, if not THE problem. I tried acupuncture and it helped, even if now I don't see anymore a huge difference ( I guess it is logaritmic).
I was thinking Hypnotherapy too, because both physically and psychologically we need to learn not to concentrate stress in that area. i guess also pelvic floor therapy would be useful, but I seem not to find anyone here in London.
Anyway.. Thank you again so much!
tuesday, december 9, 2008, 10 a.m EST, USA.
greetings from a stir crazy plateau,
how's the view?
hi again, y'all. plateaus. i'm reading about them. i'm hearing about them. it's been only about two months since i started this self conscious healing journey. i've hit a plateau. and i'm going stir crazy.
on thursday nights, i drive up to gainesville to go folk dancing. i never miss it. thursdays i'm dragging. cant do too much without the pain kicking in. i try to eat something and lay down before i go out. from the minute i walk in to dance, i'm feeling no pain. on and off, yeah, a small amount, but it's very low. on the drive home, i'm practically pain free. this amazing effect usually lasts till sometime on sunday.
on monday mornings, i'm teaching. again, such a low pain level. it lasts me till sometime on wednesday. what is this? some kind of mind body psychotropic mumbo jumbo connection. definitely.
i am definitely improving, in general. the flomax my doctor put me on seemed to work well after the first few weeks. now, not so much.
i've been putting off calling a therapist for pft because i hear the first few treatments can cause a little flare up. i have no stomach for that at this time.
now and then, i will lay down on a tennis ball. i recommend this. it feels good. press it into a sore spot, but only as hard as what feels kind of good. i probably should see a therapist and get some instruction on all this.
i've had days when i can do more: vaccuumed the house, well, okay, a couple rooms. worked around in the garden, raking, stacking pots. that was one day.
i was okay till i walked the dog and ran into a neighbor i hadnt seen in a while. that standing out in the driveway yakking it up routine. oy, that pushed me over the edge. i cramped up to the point i had to squat down on the ground. i had to excuse myself, head home, and jump into a hot shower. too much for one day.
i dont know about y'all, but as long as i'm in constant, steady motion, pacing myself, etc. i am okay. the minute i have to stand around or sit around.... cramping sets in. the muscles around my pelvis clench into a fist. typing here, for instance, i have to take little breaks, walk around and breathe. then i can continue.
still, i,ve now hit a plateau. this healing journey feels like it should be a full time job. who can do that? it takes discipline. plus, most people are working. how can someone who needs to keep a job ever get enough down time to heal her or himself.??? how can someone with kids to take care of and drive around places ever get enough quiet time to bring those pain levels down??? i dont know.
i will say this: most of us go on. we go on with what we have to do, and we deal with the pain. that's what i was doing. but since i hit the wall, and then, my pain levels came way down, guess what happened? i raised my standard. yeah.
now, i just want a tiny bit of pain. yeah. if i start to get up to my previous baseline, i stop. because i'm so sick of it already. that's why i think i'm improving. because my standard has raised, and i'm trying to stick to my regimen, or evolve a regimen that will enable me to start doing stuff again without escalating pain. hmm. does it make sense?
two months is not too long to have already achieved a higher standard. still. if i went back to everything like i was doing before, well, i'd crash again, for sure....
peace to y'all,
and love,
cyd
Hello April in London!
thank you for your post! yes, i am so glad you're experiencing some improvement from reading the book, too. i really think we're on the right road here.
if you happen to get a little setback or seem to go up and down with your pain levels and rate of improvements, DO NOT DESPAIR, that;s the normal process. a little up, a little down, a couple steps forward, a step or two back, BUT, the Trend is Healing.
I, also, hold tension in the pelvis 24-7. yes. it hurts most of the time, but little by little i'm practicing letting go, and it's definitely getting more relaxed. i bet you will see a similar result. also:
your point about tension: anxiety over our pain, worry that it will get worse again, this is called "secondary tension" . it's a very real phenomenon. i think i may discuss that topic in my next post. Dr. Wise makes a big point about the connection between anxiety over pain, and the real tension and pain, he calls it: the anxiety, tension, pain cycle.
have you ever read Dr. Claire Weekes? her book Hope and Help for your Nerves. it's excellent, and it relates very closely to our i.c. healing process. yeah, that's going to be in my next week;s post, i think.
her book came out in 1969, and it's a valuable classic. her simple strategy for coping with anxiety is this:
1. face it
2. accept it
3. FLOAT through it
4. let time pass.
she's writing specifically about floating thru anxiety attacks, BUT, i have found her simple strategy to be one of those beautiful things that can be applied to pretty much any hard experience in life. so. that's the book and strategy, and more on how it helps reduce pain in my next post, i think....
peace to you, April, and
happy holiday time,
love,
cyd
happy holidays and a good book
tues. december 23, 2008
happy holidays to everyone.! it's been a couple of weeks since my last post, and this will be my last one for awhile.
looking over this thread, all of what i've said so far pretty much holds true, and i've pretty much said it all for now.
this process is ongoing, and not much different is happening, but things are gradually, in an up and down fashion, progressing in a healing fashion.
a couple things i want to share here before i sign off for awhile and that is: a good book and also, the healing power of tai chi.
tai chi has proven to be the single most powerful healing tool i am doing at this time. i am really using it as a substitute pain pill! like every four hours, i'll take 5 or 10 minutes and do tai chi short form. it stimulates my deep breathing naturally. if i do nothing else beneficial, i do this like taking medicine. it's remarkable, amazing, and it's working. of course, i still take my meds. but i hardly ever need a pain pill.
i still am staying home most of the time, and i'm still getting 10 or so hours of sleep nightly. more or less.
if i start to get busy, even going out and running too many errands in one day can bring on increased pain. but i dont let that get me down. i think, little by little, i will still improve. i refuse to rush this process. so. that brings me to the good book.
i cant leave this blog hanging without sharing with everyone this priceless, valuable book about self healing:
Hope and Help For your Nerves, by Dr. Claire Weekes, copyright, 1969.
this book is for healing yourself from anxiety and panic attacks, BUT, i have found, thru the years, that her simple four step process applies to any difficult life experience. in a nutshell:
Face.
Accept.
Float.
Let time pass.
Dr Wise talks about Paradoxical Relaxation in his book Headache in the Pelvis. that's a long multisyllabic term for what Dr Weekes simply calls: FLOAT.
in other words, dont add tension to your pain by tensing up in Reaction to Pain. drop all secondary emotions. this is deceptively simple. it's simple like a zen koan.
it's poetically simple, elegant, yet not easy to do. yet, if you simply keep trying, but not trying too hard, to relax, then Floating towards healing is the only way.
so. we try to drop: frustration. anger. expectations. anxiety. impatience. disappointment. discouragement. worry. fear. just drop it all. and breathe slowly and deeply. it's the ONLY way.
i,ve found a physical therapist who speciallizes in pelvic floor therapy, and am in process of getting my referral, etc, so i can start with her within the next few weeks. of course, she's not in my network (insurance, grrr...) but, hopefully, it wont take too many sessions, and she can teach me stuff to do at home.
i,ve heard so many good reports from several sisters here on the network about how much pft therapy helps, and i can see now i'm ready for this next stage. we each need to go at our own pace. if we push forward anxiously, we'll tense up and make it harder on ourselves.
so, to sum up, thank you to everyone.
i started this blog intending to share some pointers with y'all, to give back to the network here, in return for all the wonderful pointers, advice, and practical help i've received here over the past two years or so. and what i got instead, or maybe in addition, was so much: community, generosity, support, encouragement, validation, and strength.
please, feel free, anyone who wants to, to take over this thread or add to it with any good ideas or process stuff of your own.
thank you to everyone.!may we all go forward thru the beautiful holiday season and into the new year towards more healing, reaching out, helping each other, and sisterhood.
may all our good days increase.!!
signing off,
LOVE!!!
cyd
aleet7
12-23-2008, 06:08 PM
Merry Christmas Cyd!
I'm glad to hear that you've found a good PFT! I have to give credit where it is due, but the therapy has given me the ability to ride in a car without the engine killing my bladder! For over a year I would experience pain while driving and riding because the motion of the engine sent my bladder into spasms! My therapist told me that my pelvic muscles were tightening on my bladder which is already inflammed to protect it from the trauma of the engine shaking! Is that strange or what? But I can honestly say that I can ride or drive now with minimal to no pain because of therapy.
Also, I'd like to thank you so much for sharing with us about relaxation techniques! I've since been doing breathing exercises that allow me to relax my pelvic muscles. This is really helping me to release tension!
I hope that you don't stay away too long or I'll miss you!
Merry Christmas!
Aleet7
thursday, february 19, 2009
HEALING HANDS: PELVIC FLOOR THERAPY
hello to all my sisters and friends who were following my blog the last few months, and Hello, hello; i am Back.
since the last week or so of january, and since feb 2, i've been getting pft (pelvic floor therapy) twice a week. and it's helping me ALOT>.
so! again! now, where to begin???
here,s the email i sent my friends when i got back from my first appointment:
****************************************************
NO MORE COFFEE?!?!? Monday, February 2, 2009 5:14:49 PM
hi !
the therapist told me, NO MORE COFFEE!?!? how do some of you darling people live like that?Q?!? ARGH! HOW will i ever wake up in the morning???
she said: if you had a heart attack, would you then go back and eat fried food/? she said: yr bladder has had a heart attack. oy. such an analogy. and there's more.
i am now enrolling my blddr in bladder kindergarten. yes. it has been having tantrums, and needs limits. i am on a shcedule, when to drink and what time to pee. i am not aloowed to get up so much in the nite. i must sit and contract for 10 sec and then 20 deep breths. i am allowed to lay on my tenis balls. thank goodness for that! oh yes, and if J knw how all this feels, he would say ok, cyd, in this case,you ARE laying an egg. oy.
oh and one more thing. not only is it now in kinnygarden, but the bladdr can also be compared to a dog. yes. i told her have you any i dea how spoiled my dog is??? she said: she's not surprised. she said, my bldr is also spoiled; it has taken over my life and now needs to be trained with consistency. she was full of analogies. very helpful. really. i am just so thrilled. who would have ever thought a bladdr could be the recipient of so much creative strategy! i have pages of instructions. wow. so, for $180.00/hr. she's really pullin out all the stops. yeah. i think it;s gonna be worth it. keep yr fingers crossed. (but not yr legs! ha ha)
lvoe, paec, joy, and all dshlexic hipponess,
cyd
******************************************************
Hannah (my mother) said: cydney, dont go off that coffee cold turkey; do it little by little. mix a little postum into yr coffee, or make it half and half, and drink it like that for a week or two.... oh, right, ma, yeah, sure, okay.... did i listen??? :loco: no.
by the first afternoon, i had an eyeball pounding headache. by the next morning, i was crouched on the floor of my bedroom, launching into one of the biggest cryin jaggs i've had in quite a while... Major Mood Swing??? i think not. i NEED my COFFEE.!!! okay. so.
i rushed into the kitchen and made a POT of Coffee! oy, just the smell of it in the bag made me feel i could put the razor blades away. well, i realize all this may be so inappropriate on this websitte where most everyone has already gone coffee-free.
well, i hear postum is no longer on the market. hmm.
dandyblend is pretty good. i had that at my mom's house last week. it's better than postum. well, i may order that on line. MEANTIME>>> yeah, i am still drinking coffee. and, in spite of it... i... am.... GETTING BETTER. and that's really what i,m here to write about today.
ANXIETY ATTACK
i,m taking Pelvic Floor Therapy at the Rehab Center at Shands at Magnolia Parke in Gainesville, Florida.
the first session was an interview about my symptoms and my illness, followed by some diagnostic measuring of my alignment and how tense i am.
in the second session, my therapist, vicki, and her intern, helen, sat down with me and opened my mind to what exactly is goin on down there: an... anxiety attack! it's not an analogy, it's a for real thing.
when yr anxious, it,s commonly known many people have palpitations. that,s a flutter of the heart. it,s involuntary. yr heartbeat is controlled by the autonomic nerve.
and so is your... b l a d d e r ! that's why when we,re anxious, we,re more likely to have an attack or a flare. we all know, stress can cause flares...
what i didnt realize, and what she explained to me, is: the bladder can be jiggling and vibrating constantly, like it's overstimulated and having palpitations, and that can cause that crazy, phantom, constant urge to pee.
which is why deep breathing can help.
part of what,s going on down there is a bladder's version of having palpitations. again, i harken back to the book, Hope and Help for yr Nerves, by the immortal Dr. Claire Weekes. that book is right on. :pray:
... to be continued....
Sunday, Feb. 22, 2009, George Washington's 277th birthday
HEALING HANDS: pelvic floor therapy, chapter 2:
biofeedback and music to my ears!
... and more than you ever wanted to know about my pelvic floor, but were afraid to ask....
at my second or third therapy session, helen hooked me up to biofeedback to take some baseline measurements of what my pelvic floor is doing and how tense i am. every now and then, they'll hook me up again to measure my progress.
biofeedback seemed scary to me at first, those weird electrodes and all. they do NOT hurt. well, luckily i did NOT get the vaginal probe. yuck, been there, done that, and i did NOT enjoy THAT experience. but, i digress. no vaginal probes here.
BTW: a little pointer about vaginal probes: i had a bad experience with one once. i had to get an ultrasound of my uterus. it's bad enough you have to go into that test with a full bladder. so they can view the uterus or something.
the nurse tried to put in the vaginal probe, and i went absolutely ballistic on her. :rant: i am not kidding; that thing HURT.!!!
SO! this was one very wise nurse. :angel: she said, here, honey, put it in yourself.... that was like magic. it was still no fun, but it went in a whole lot easier. i only share this because it was such a helpful experience.
if it hurts, ask to put it in yrself.
now, back to helen and biofeedback :
she stuck two little circles connected to wires, one on either side of my anus (!) and a third one on my thigh. the third one is a "grounder." they stick it in a calm place where you have no pain. the other two circles measure against that one to get a reading. i think that's how it works.
the 3 little circles stick on with tape or something sticky, and it doesnt hurt when they pull them off, either. neither can you feel any electricity or anything at all. it's a perfectly comfortable situation.
i laid back, closed my eyes, and tried to relax and do slow, deep breaths. meanwhile, the machine in the computer recorded my pelvic floor activities.
what exactly is your pelvic floor? your pelvic floor is not flat. it's shaped like a bowl. these are the muscles that support, hold, and protect your: bladder, rectum, and vagina, uterus or prostate. also, the pelvic floor muscles surround and control our openings: the urethra, vagina, and anus.
there's fluid inside that bowl area, surrounding and cushioning our organs. in an ideal and normal situation, the pelvic floor is strong, but relaxed, and holds your organs in balance. your organs should float around a little bit, peacefully, in there. they should fit together near each other comfortably. your organs are meant to float around freely like seaweed on the ocean floor. (my therapist, vicki, gave me that image; i really love that, and i imagine it when i do deep breathing and try to drop my pelvic floor. it helps!)
well, you can probably see where this is leading; when the pelvic floor tenses up, it starts squeezing too tightly. it can pull toward one side or the other, yanking our organs out of alignment. tight pelvic floor muscles can pinch our organs and squish them up too close to each other, and then: OW! these same tight muscles can also involuntarily pinch our orifices and make it difficult for us to open and close them naturally.
so, it makes so much sense. so that's why it feels like i have to pee when i really dont, why it's so hard to release and actually go pee, why it hurts and burns when i sit. those pelvic floor muscles have just really been overdoing it for quite awhile.
biofeedback reading:
after a few minutes of resting quietly and relaxing while the computer recorded my pelvic floor, helen asked me to open my eyes and look at the computer screen.
there was a line graph of my pelvic floor activity. it looked like the Himalayan Mountain Range. not only was it sharply mountainous, but the line of elevation was half way up the screen instead of at the bottom where it should be. the mountains are muscle spasms, and the line of elevation is the degree of tension. even when "at rest," my muscles are hypertonic, way too tense.
my pelvic floor is in constant spasm. during those few minutes of relaxation, i was able to calm it down, relatively, for only 10 seconds. these are involuntary spasms that are going on inside me all the time, which explains why i always have dull, aching cramps and constant urgency. :toilet:
well, helen said, this is why you,re here, and, i can tell you, this is what we fix. you,ve come to the right place, she said.
music to my ears! :cat:
aleet7
02-23-2009, 12:49 PM
Hi Cyd!!!
Glad to hear from you! Your PFT info is right on target.... I hope everyone that is looking forward to their first session takes a peek at your post.
Best Wishes,
Aleet7
:mad: a bad night
well,here i am at two am very frustrated with my usual problem. the annoying powerful constant urge to pee. :headbang::toilet:sorry but i feel like pulling out all my hair right now. and i m so frustrated esp now after one month of twiceweekily pt sessions, very expensive with my stupid minimal insur policy and i was so hoping this pt stuff would help me and still same ol same old i am crawling up the wall, and im on the valium and truly nothin seems to take away this insane urge to pee so. :loco:and she wants me when i wake up like this to lie in the bed and listen to sweet calming music and not go to the toilit, so ive been awake now last 2 hrs and what's the point to go to toilet nothin but couple drops will come out. :dizzy:dont expect life to be purr fect, cydney, that's why they call it earth and not heaven. i,m spittin ornery. spittin snarlin ornery as a mangey fleabit alley cat down a dark damp deadend road with her back up against a brickwall surrounded by a pack o junkyrd dogs. :cussing:and cant sleep. thanks fr lettin me vent.:rant:
ohm. :pray: well, y'all, no biggie, just a little setback, that's all.:bonk:
love, cyd:cat:
aleet7
02-27-2009, 04:08 AM
Sorry about your bad night Cyd! Don't you just hate the nagging urge to go all night! I complained about it and ended up on Gabapentin which caused water retention but stopped the urges the first time I took it.
About the PT, it takes time to really see results sometimes. I was experiencing bladder pain while driving(because of the engine motion). It took almost 4 months of PT to see a big difference in that.
I just hope that you can get some sleep tonight! I'm sorry that I can't help in any way.
)))Hugs(((
Aleet
hi Aleet!
i am a-ok. i have these bad nights once in awhile.
last night i did sleep 3.5 hours straight without having to get up. and then i went pee, then i could fall back asleep.
listen! about every third night or so i can now sleep 3-5 hours at a stretch. that is a big new improvement. sort of. i attribute it directly to the PFT. befor the pt, i was up every single 1.5 hr to pee or just try to pee with not much result. very tiring.
i now got AMY STEIN:S book: Heal Pelvic Pain. i ordered it on amazon, but the first time i ordered it never came. sometimes that happens. i reordered and now finally have it. i will let systitis, who recd the book, i will let her know how GREAT it is!!
i am now trying to be more disciplined and follow her program. okay. yr right this is taking so long. and i have setbacks. i shouldnt get discouraged. many many people in the world have it way worse than i do.
listen, what about you? how are you doing? still practicing deep breaths? how's it going? you have a busy schedule, dont you? any pointers or insights that youve discovered over the last couple of months?
keep in touch, we'll keep remembering to slow down momentarily and breathe deeply.
more later, take care,
love, cyd
aleet7
02-27-2009, 02:02 PM
Cyd,
I'm doing ok. I feel like either a flare or UTI is coming on but I'm doing everything to avoid it by drinking plenty of water and taking pyridium.
My mom has been at my home for 3 weeks now(from out of town) and I have been hiding my symptoms and avoiding saying anything about IC to her. She clearly does not believe that this condition exists. Anytime I tell her that I can't eat things(the things that she's eating such as jalapenos or oranges) she gives me this long talk about how drinking water can make everything better or how her bladder bothers her when she doesn't drink enough. I can't make her understand so I avoid talking about IC or how bad I feel if I have something that hurts my bladder.
I'm still trying to slow down and do my deep breathing exercises. I think that I've been doing even more to accomodate my mom being here and I'm so wiped out!
About the sleep issues and urgency, I average about 3 hours straight before I have to go to the bathroom(big improvement)! I felt so bad when I read that you were having a bad night! My doc told me that my sleep habits are not helping my high bp so I'm trying a sleep aid tonight to help me sleep through the night. I just hope that my bladder doesn't hurt when I wake up in the morning! I'm glad that you had a decent night!
Best Wishes,
Aleet7
tues. march 3, 2009
pelvic floor therapy~
healing hands, part 3:
SEEING IMPROVEMENT!:smile tee
in a typical session of pelvic floor therapy (pft), we first talk a little about how i,m :) improving.
in the month of february, i had 8 sessions.
the biggest improvements i,ve seen so far are:
1) before the pft, i would sit down to pee, and it could take anywhere from 3 to 10 minutes for me to relax enough to even start to pee. i am NOT exaggerating! then, it would go, drop, drop, drop, and take forever to come out. i know to strain is bad, but if i didnt strain, i would get zero.
so, now! i can actually sit down and pee!!! :smile tee almost like a normal person! not every single time. still, especially later in the day, i still have to meditate a bit to get my flow to start, but the improvement is clear and obvious!!! the flow is stronger, the spasms are weaker or going away, and the urge to strain is less. much less.
2) the second obvious improvement is during the night. before the pft, i woke up like a clock every 1 and a half hours to pee. and then it would be a burning drop or two and that's all. frustration!!!:toilet:
now, i am able to sleep some nights for anywhere from 2 - 5 hours at a stretch! and when i get up to go, it's amazing that i can again pee almost like a normal person . again, this is not every night. i can still have a bad night, but it's only once in a while, so this is clearly definite improvement. it's like a miracle!!! :angel: i am not kidding.
an important discovery:
i still have almost constant urgency. it's usually not as bad as it was, and i,m able to jack it down a little more with slow deep breathing and by pretending i am floating on a cloud.
AND, instead of squeezing and lifting and holding it in, i have now discovered, when i have that gotta go feeling, i have discovered how to relax and drop. just float with that feeling. i will not explode, and in my case, i won't leak. squeezing and kegels were making my urgency worse and making it harder to start my flow when i finally did reach the toilet.
i am slowly learning to relax and drop the pelvic floor. so i am not so high up and tight inside my core all the time. that was making everything worse and worse. i am slowly, diligently, and consciously breaking the cycle of tension, pain, anxiety, and urgency.
when i consciously relax and drop, as if a bowling ball is dropping out of my vagina, i can instantly feel the urge to pee get just a little bit less. for a few moments. this is done with visualization and a slow deep breath. just imagine and say to yrself: heavy, heavy, let go. :pray: i can feel the pressure lift off a small amount.
pattern of a lifetime:
really, i also realize something now clearly, and for the first time, (you, my readers, may recognize a similar pattern in yourselves):
all this tightness predates my illness. i,ve been diagnosed with IC for only the last 3.5 years, but a lot of the symptoms have been with me ALL MY LIFE. this tight feeling deep inside my body has been like normal for me all my life. then, it just went over the edge and started causing bigger and bigger problems. so i am really now faced with breaking a lifetime habit of holding myself high and tight in my core.
i,m learning here to let go like this for the first time ever.
so, let's just be REAL PATIENT HERE!
we have got to LOVE OURSELVES and OUR BODIES UNCONDITIONALLY>
we must show our own selves ALL THE T>L>C. possible.
since i still have constant urgency, which can be discouraging, i have decided to ignore it as much as possible and NOT use THAT symptom as a guideline to measure my progress. i am still making progress, and in my case, that's my most stubborn symptom. so maybe it'll just be the last one to go. no reason to beat myself up about that.
:hi: to sum up here:
A. PFT WORKS!!
B. DON'T MEASURE YOUR PROGRESS BY YOUR WORST OR STUBBORNEST
SYMPTOM.
C. GET PAIN LEVELS AND URGENCY DOWN TO WHERE WE CAN MANAGE WITH VISUALIZATION OR DISTRACTION. I,M STILL TAKING ALL MY MEDS.
D. EXPECT IT TO TAKE LOTS MORE TIME, AND
E. STAY ENCOURAGED.!!!
F. REMEMBER, THIS IS PART OF OUR LIFETIME JOURNEY, AND
G. IT'S NOT EASY!
hangin' in there and makin' steady progress,
yrs,
cyd :bunny:
tues. march 10, 2009
a powerful connection:
several weeks ago, an i.c. sister on this network p.m'ed me with some good advice. she, like me, suffers more with urgency than with pain. her doc put her on celebrex and her urgency went away. that puzzled me.
i remembered celebrex as being that arthritis med that was in the news a couple yrs back for having problematic side effects. i looked it up on wikipedia. it's an NSAID like ibuprofen and is also commonly prescribed for menstrual cramps. hmm.
it had never occurred to me to take ibuprofen for urinary urgency. then, i tried it. the dull, achy cramps i always have went away temporarily, and the urgency did not escalate.
this is the first time i made the connection between the dull, achy cramps and the urgency.
in the morning, i,m usually pretty okay. as the day wears on, the cramps come on, and then later, if i,m not careful, or don't pace myself, the urgency can really get bad.
it's all connected! like how dumb have i been all this time to not notice this sequence of symptoms!?!? :loco: so! when i get the crampy twinges, i stop and do some slow deep breaths. if i am sitting or standing, i start to walk around a little. i stretch. anything to break up the cycle, to relax the muscles.
if i can delay the cramps from coming on, i can delay the urgency, and the longer i delay during any given day, the less severe the symptoms are. that's a powerful connection, and i am grateful to b.j. here on our network for pointing that out to me! thanks!
peace :pray: and smiles to y,all!
cyd:hi:
aleet7
03-10-2009, 04:10 PM
Cyd,
I'm glad to hear when my fellow IC sisters find what works for them. Since I joined the board I learned that we all have a certain combination(meds) which works for us. I cannot take Ibuprofen since it aggravates my IC. My issue isn't with urgency as much as it is with pain and burning. Tylenol or something much stronger is my med of choice for the symptoms which ail me.
I love the deep breathing techniques but presently I'm in a flare with an UTI and not much is helping me at this point. I'm praying and thinking positively that my flare will not last much longer.
I'm so happy for your progress!
Best Wishes,
Aleet7
purpleviolet
03-10-2009, 06:07 PM
I suppose if cramps were an IC symptom and the bladder lining was not compromised (foods/drinks not irritating) than I would think NSAIDS would be good but on the other hand if the lining is compromised then NSAIDS would be bad. Atleast I've read that somewhere on this forum. I'm not sure if this theory is confirmed by doctors or not. We are so individual. If only the doctors could do the same type of testing on us that is done in research centers to really see what our individual problems are and taylor the treatment to us. PV
Hi Aleet! i ,m thinking of you, hoping and praying you get out of this flare FAST. healing energy in yr direction. Love, cyd
arkitekton
09-11-2011, 10:39 PM
I've had some success with the Paradoxical Relaxation part of Dr. Wise's A Headache in the Pelvis but still suffer a fair bit and am wondering what I can do next.
My frequency has been reduced from 60 to 30 times a day, which is good, of course, but still limiting. I still routinely have a strong urge to urinate, which distracts from other activities, and after half an hour to an hour that urge becomes painful, often excruciating. The pressure that turns to pain is typically located in a golfball sized area just beneath the skin of my perineum.
This is all better than it used to be, and I've gone from waking ten to fifteen times a night to three to six times a night. Still, the worse part is when I'm away from home. It's often difficult for me to urinate under the best circumstances. In strange bathrooms, with noise and distractions, friends or date waiting for me to finish, it's all but hopeless, and that has severely limited my social life.
How have people who have gotten some moderate benefits from the book and the advice therein continued their self-therapy? I'm at a loss for how to continue, but without further progress my life will continue to be lonely and limited.
For what it's worth, I've tried just about every medication there is over the course of five years. I've even tried the Interstim implant, but had no luck with it.
Thanks for any help anyone can offer.
hello arkitekton:
Hi. well.
Have you been scoped recently? is your bladder actually inflamed inside or is it nice and pink? the doc can tell you when he scopes you.
that makes a big diff as to what is actually going on and how to proceed next/ If you have redness and inflamation, you should get some relief from dmso or other instills. that took me about half way.
then once the inflamation calms down, what you are experiencing is leftover muscle spasms which can still feel like the same horrible burning. those muscle spasms can be further healed and relaxed with Pelvic floor therapy.
Find a physical therapist near you who specializes in this. there are many.
The best book on this for self help is: Heal Pelvic Pain by Amy Stein. she has been on TV.
Also, you can help yourself with a crystal wand. you can get it on line: Taylor Lamborne's crystal wand is an s shaped lucite dilator and g spot stimulator. get the regular one, not the deluxe. insert it about an inch, more or less, and use it as a lever to gently stretch muscles of your pelvic floor.
I am now almost 100% healed but I still have some discomfort. and now my pain has moved around into my hip and lower back.
I C is now well known to be a Mind body Syndrome. Please check out these websites:
Abigail Steidley, the healthy life coach thehealthylifecoach.com and
Dr Howard Schubiner: unlearnyourpain.com.
I am now working thru his Unlearn Your Pain workbook. it has a meditation cd. I got it on amazon for $25.
Most likely since meds are not working for you (they didnt do anything for me either) Most likely you have Mind Body Syndrome. You can heal yourself with the power of your mind. I DID> IT really works.
Abigail Steidley specializes in this. check out those websites and continue on your journey.
sometimes it feels like when the door only opens a crack, suddenly we see we can Kick it open, walk thru, and the pain starts to go down pretty fast. CHECK IT OUT.
Love, cyd:hi:
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