Need the wisdom of those who have gone before

[MakinIT]

Ok my wise sages: Now that I know that nerve block sucked (and there is NO WAY in heck I alllowing that little procedure again:frown: ) What usually happens next? I'm waiting, patiently, like a good little girl, for more info, but it ain't coming. Is that normal? Do the docs eventually give up and hope you'll sorta go away...? come back for morphine refills and little chit chats about how sucky your life is, then see them again a month later, and repeat? Crap.
Since Frequency and urgency aren't the number 1 problem (granted, I pee alot) I don't think I'll be a good candidate for interstim. I really just want pain gone and to be able to drive across town.

Thanks guys....Oh...I've blabbed more in other sections too...lots happening...

Tracey

[yvette]

I wouldn't even bother if you're looking for pain relief. When I went to talk to the
Medtronic rep, he told me "if you are looking for pain relief then you should go elsewhere"
and leave him alone. However if urgency and frequency was the case, then yes, he could help and Interstim could very well be the answer.

Have you perhaps considered a pain clinic -- if you haven't already or perhaps alternative
treatments or even a pain pump if you have extremely high constant unrelenting pain.

I just know you will nothing but disappointment with Interstim, knowing its not for pain.

I really hope you can find something more viable. :)

[tigger_gal]

I most diffently agree, please do not consider the interstim for pain.. I have the interstim and I "STILL" have pain.. I capped that to stress that it won't help.... It did help the urgency pain, but not the pelvic or bladder pain.... I hope you find pain relief. (and when you do clue me in :))
Hugs
Brat

[ICNJess]

I hate to beat a dead horse, but...if you want pain relief, try something else. I take it narcotic meds don't help? I was one of those very few that had pain relief from Interstim. I still have pain, but it is not nearly as bad as it was before.

Hugs and love,
Jess

[MakinIT]

I'm on some pretty hefty narcotics (or it seems to me) and it was the pain clinic who did the nerve block. I take 30 mgs 3 x /day of MS contin, valium 3 x per day and lots or other goodies (a little topamax, some lexapro..etc..) No one wants to up me on the narcs, including me, but then I find myself searching for pain relief in the not so approved arena (which has been actually suggested by counselor and shrugged at by docs..I do tell them everthing I do, just make sure they don't always write everything down, which they don't) Anyway that's about all that works, and that is only sometimes...I'm beginning to wonder if I'm just stuck like this and I'm going to have just suck this up. Hard to when I'm curled in a ball, bawling my head off. I'm bound and determined to start school this summer, part time to add a specialty to my teaching cert. (Vision teacher) I need to figger out sumthin by June 21st. Maybe I'll just smack myself in the head, then I'll forget about the pain in my gut for a few minutes!!!;) "Sigh"
What am I going to do????? And I wonder how come I keep getting so depressed. Also, everytime my doc wants to look at new drug for me my insurance kicks it out!!! won't pay for it.

Oh well...focus on the positive, focus on the positive...

[sawhammy]

Not to beat a second dead horse... but, atleast once a week, I get a phone call from a patient in horrible pain... who DOES not follow diet at all. Talked with one patient who drank two six packs of ginger ale A DAY ... and she HAD the interstim done before anyone had even told her about diet. And, given the massive inflammation she was creating in her bladder every day, I doubt that anything would have reduced her symptoms. So.... if you're struggling with pain, it's always worth just doing a second look at diet as well.

Here's another true story.... a patient called who told her husband to stop by her therapies. She'd rather drink coffee and take her pain meds than actually try to get better. Ohhh... how cruel that was to her family... for not even TRYING to get better. I was angry as heck.

IMHO... the most frustrated patients are those who continue to drink one cup of coffee a day (or more).... or sodas, or teas, or concentrated juices... or lots of herbal complexes or mega vitamins. If you're doing any of those... it's definitely worth trying to stop those first.

FYI... When I was newly diagnosed, I was a horrible pain patient. Walking was painful. Driving was impossible. It didn't help that I was drinking cranberry juice and soda by the gallon. When I finally met another patient who told me about diet, the change was amazing. Yeah, it took time... probably about six months before the massive diet induced inflammation went away.... but it was a huge difference. And, yes, I was tempted to be one of the earliest interstim patients of all back in the early 90's here in CA.

icnmgrJill

[Teri]

Tracey~I am now 'just' a pain patient. I go monthly for my refills and figure that unless a miracle happens in my life time, that's the way my life will have to go. Right now I'm at the stage where I'm trying my best to practice acceptance. Did the interstim, did NOTHING except double my pain so I am NOT opened to any more invasive procedures.....

Just wanted you to know I was thinkin' about you and
wishing you well:blink:

[MakinIT]

Really...I'm not a whiner:) Only when I get too frustrated to figure things out on my own and I usually am just fine about figuring out stuff, My diet is good. I do have to sneak an occasional cup of coffee but it is generally a breve latte with 1 shot of low acid coffee, and sugar free flavor. (diabetes) That's my treat and I do prerelief and don't seem to have any probs. I avoid most artificial sweetners like the plague (exceptin coffee drinks..don't have a choice) but do drink splenda or stevia. My father in law has taken over cooking duties and I can't make him understand my needs...He just doesn't get it that I can't eat spagetti or tomato soup or what ever spicy concotion he's put together, and that usually food sound yucky to me anyway. so his feeling get hurt. I tryto explain that eating that would be like get a punch in the stomach and a fire burning from the pits of my pelvis but that just ain't graphic enough:scream: So, I stick to very high in fiber toast, water, cereal (sometimes, if my carbs for the day are ok) pears and blueberrries, some veggies, a little meat and ice cream. (OK>>>> it soothes my belly!!!)

Reallly sleepy this morning, don't knowwhy..it's only 8:30. Think I'll thake my perogeratove and go back to bed. My only task today is to take the cat back into the vet...his 40 stiches didnt hold around his elbow and broke open so I can see tendons and muslces......ick. It's about the size of a quarter. don't know what we are going to do for him.

talk to you later.

[ICNJess]

Tracey,

Before I got my IC under control I was so depressed. Cut yourself some slack, you have a lot on your plate. Pain depresses people and just the everday IC bullcrap too. Hang in there, I hope you find something to help with the pain!! It has taken me a year after diagnosis to finally be able to get it under control. It's not all the way under control, but better than what it was.

Hugs and love,
Jess

[yvette]

:kissing: Tracey, smootches to kitty -- hope he feels better too.

[lotsofgirls]

I was wandering around the minefield of nerve blocks and interstim, but I think I am going to try an all out assault on my diet and stress problems and see if managing with pain meds alone (plus all the other meds for IC) is enough.

It amazes me how many times I read through my IC sisters posts and realize something important.

What on earth did ICers do before this site? I shudder to think.

Love you all, your angels!!
Cath:angel:

[dyno]

Cath,
I don't know if you are a Prelief user but if you are going to try the diet real hard, Prelief is a big help to many with IC. It might be one more thing that could help. Good luck.:)

[ICNJess]

Hi Cath,

That is a wonderful idea. I am so glad that you are going to try that approach first. Interstim's a drastic measure and nerve blocks aren't too much to go through (although they do help some people). Diet and stress elimination is a good place to start. I wish you lots of success. :)

Hugs and love,
Jess

[Julie Smith]

Tracey,

Sorry you're having just a rough time, even after nerve block. My biggest compaint is also pain, so I know how you feel about that. The more I hurt it seems the more depressed I get. I also started with pain dr. 4 weeks ago and I'm scheduled for a sacral nerve block, what type did you have? I sure hope to have better luck than you cuz then I'll really be ........

I hate you tell you, even though you don't want to hear it.............

I wonder if you're pain would decrease if you were to eliminate the coffee drinks, and known ic aggravants, etc.

Wanted to let you know I think you're hysterical sometimes!! !!!!!
have you ever thought about being a stand up comic????

Hugs to you, Julie:grouphug:

[MakinIT]

Now Julie...reread that nice little ol' post in the last post. I only "treat" myself very occasionally and am careful about what I do eat/drink. The coffee cup moniker on my name is only wishful thinking..I do prerelief and t hen a breve latte (1/2 and 1/2 with a low acid espresso shot) My neighborhood starbucks has a special low acid blend they sell and they always use for me. and instead of 2 shots, I only take one. I put a little sugar free Vanailla just for fun. So...It is my treat. How do you spell pbpbthththbp:p !!!

Anyway..just ate some toast...woo hoo and honey nut cheerios. Yipee. Not much harm in that is there?

As far as stand up comic goes...I am much better at writing....however, my husband won us trips in college (and money) by winning stand up comedy contests...he is, however, very shy in front of one or two people and doesn't know to write with humor......

See you later .........:) :) :) :)

Tracey

[Julie Smith]

Hi Tracey,

Please know I didn't mean to pounce on you at all.

You're writing is very funny and makes me laugh!!!!!!!!!!!!!!!! As I'm laughing I can relate with exactly what your saying and then it doesn't quite seem so bad. Like someone else is going through exactly what I am and that makes me feel better. Not that I want anyone else to hurt but it makes the illness more real. You know the thing with the family and not understanding.


You really have talent, have you ever had anything published?
Thanks for making me laugh! ;) :)

[Julie Smith]

Hi Tracey,

Please know I didn't mean to pounce on you at all.

You're writing is very funny and makes me laugh!!!!!!!!!!!!!!!! As I'm laughing I can relate with exactly what your saying and then it doesn't quite seem so bad. Like someone else is going through exactly what I am and that makes me feel better. Not that I want anyone else to hurt but it makes the illness more real. You know the thing with the family and not understanding.


You really have talent, have you ever had anything published?
Thanks for making me laugh! ;) :)

[MakinIT]

Eh..no big deal to me...I looong for my coffee in the morning and soothingly rub my mug. My family has seen me stagger for the pot and pour an empty cup!!!!:)
I took kitty to vet this afternoon. After 5 staples (which I could hear him HOWLING at from my little room) and a swab of his ears which showed a bacterial inftection of mites (I've been trying to get rid of those since we got him from the pound at Christmas) I paid 116 bucks. I just hope 116 buck appears before the check clears. What are you gonna do? Maybe disabillity will come a little early this month. Too bad I'm not Irish..I could have some luck there since it is St. Patty's. :rolleyes: And, of course, the kitty is treating ME as if I were Satan reincarnate...Gee whiz...Just because I crammed antibiotics down his throat, flea meds on his back, and stinging antibiotics down his ears. (and also took him to the "evil place" to get stapled) No appreciation from the 4 legged beast. Oh well, the kitty's predessesor, POUNCE was just as irritated and as he aged, he was there 2 x a month till he was put to sleep at christmas,:frown: I still get sad about that and cried for two months after. He liked to snuggle under the covers with me, and my new kitty is taking some time getting gaining trust. I'm sure today's activities will do alot to inspire confidence...NOT! (I just got him to the point where he would sleep next to me.)

Anyway...Am feeling better today in terms of pain..its low, but I am tired. I'm about to start a Tai chi and Yoga routine to get my blood going, maybe peddle on my stationary bike. Once again, I'm so glad my hubs got me an IPOD so I could listen to music as I peddled in my boring, stinky, cold, and dirty garage...(ugh...its the day before garbage pickup...maybe I'll wait)
Have a good night...T

[MakinIT]

Oh Julie

The only thing I've ever had published was my Master's thesis. Yuck...boring. No humor in that, pretty dry and full of statistical info. I fell asleep writing it, but I can write humourous or dull. Hard for me to write without throwiing in a "sarcastic" or some sort of mild humor even those dull papers. I once wrote a paper in college cognitive psychology (basically a class about memory and intelligence) about my constant problem with loosing my car keys ( I still lose them) and all the techniques I've tried to use to remember my keys... and my subsequent failures!!! My teacher though it was so funny I got an A and he asked me to be his TA the next quarter. Hey...Who'da thought a smart ass would get you places.???

Right now...it is a coping mecanism. I write and communiciate with you all to make myself laugh. I have to remind myself..."hey..it could be worse, right?" Especially when the blues really hit and I just want to go to sleep and not wake up. There are times when I simply want to curl up and die. Then I have to "slap myself" out of it and I usually find this message board and read for a while before I write. I have to be reminded others are also in pain and I don't have exclusive rights on pity parties. (But sometimes I sure wish I did!:)

Anyway...My savior is my humor...Used wisely, it can make a difference in how you see your world. (Besides, I have a 14 year old girl now, I HAVE to Have a sense of humor:blink: )

T

[Dixiefireball]

I do have to agree with the others here you do have alot on your plate i was almost like you a while back
I had to give up alot as food and drinks goes but it was wroth it to get better.
there is still many treatments out there and new ones coming out
just please remember that the implant is not for pain. even tho i had a pain clinic try to make me think it was until i came to the board to look for answers and i asked alot of question it was not for me and thank heavens for this lovely ic family here i didn't go threw with it it would have been a big waste of time plus money.
God bless you I'm sending you hugs and prayers for a better tomorrow.
Rhonda

[MakinIT]

Rhonda

I'm not anything anymore invasive. I just can't take it. My body is not made for it...nor is my mind. I hate to admit but I am such a weenie about pain, especially when I have the pain on my calendar under a date and time. It's one thing to have your gut suddenly cramp and behave as if your insides are a soccer ball, but psychologically speaking....quite another to just plan it. CRAPOLA :eek: So, I'm going somewhat alternate for awhile till that frustrates me. I'm seeing an accupuncturist, the chiropractor as well as traditional medical folks, whom I'm just asking tohelp me with the pain. (IE: Give me meds...maybe just some breakthrough is what I need) The PT's have really helped me with exercises. I see the accupuncturist tomorrow so we shall see how It goes. I saw her two weeks ago and It felt kinda good but i think that was cause I got to relax. (I used to see her when Ihad migraines so I knew what to expect, except the needles were in different spots......like one directly on the pubic bone...geez..talk about finding a needle in haystack later....I need to remember to "put my sheep in the pasture" tomorrow when I shave before I go to my appointment) So embarrasing to have to search.

See you later!

T

[Julie Smith]

Hi Tracey,

Glad to hear you were feeling better this morning, how long did it last? I get great results from my chiropractor who also does my acupucture The more you write, the more I see our medical similarities. We even diagnosed ic and meds, treatments, etc about same time.

Still haven't found SACRAL NERVE BLOCKS website or info. People keep sending me pm w/ websites, only it's not. What type of nerve block did you have?

Glad you shared your writing awards with us. Keep it up, cuz I love laughing when I read your writing. You really have talent. I spent the day sleeping in (so what else is new?!), then went to dr.s appt., errands and home to nap.

Take care,
Julie:D

[Julie Smith]

Hi Tracey,

Glad to hear you were feeling better this morning, how long did it last? I get great results from my chiropractor who also does my acupucture The more you write, the more I see our medical similarities. We even diagnosed ic and meds, treatments, etc about same time.

Still haven't found SACRAL NERVE BLOCKS website or info. People keep sending me pm w/ websites, only it's not. What type of nerve block did you have?

Glad you shared your writing awards with us. Keep it up, cuz I love laughing when I read your writing. You really have talent. I spent the day sleeping in (so what else is new?!), then went to dr.s appt., errands and home to nap.

Take care,
Julie:D

[MakinIT]

Let's see: I had a "hypogastric nerve plexus sacral block" How is that for a mouthful. I went into it knowing it was simply diagnostic but was hoping the pain relief would last for more than 2 or 3 hours and that the versed would make it all a dream. It was a nasty nightmare. They had to pin me down even with the sedation and called in the nurses out front to help...Now, I know thats MY experience and I am also dealing with alot of trauma from past medical issues so other people have better luck. I was just fortunate enough to have all my "dreams" come true. (eh...that was sarcasm incase you didn't recognize it)...not only did my butt get painted purple iodine but it hurt like hell for days and depressed me to the point of wondering how to get out of this damn life. My kids keep me going though. Icouldn't do anyting to ruin their lives. My 14 year likes to fling in my face that I never do anything with her anymore, don't take her shopping...etc...I try to explain that it hurts towalk very far, to move, but I can by looking into her eyes she doesn't "hear" me. Yes, she can repeat it, but it hasn't reached her heart..she is, afterall, an adolescent and the world revolves about her needs...however, I'm trying to impress upon her that I just can't do what I could. GEEEZ..I'm rambling.

Wish I could sleep in :blink: I still get up and get the kids moving. One of my only duties left in the house...But after I get the kids to school and I take care of my appts....I come home and often sleep for HOURS (like from noon till 6:00) and I am OUT. Maybe it's cause it is so quiet, no snoring partner, whatever. My kids and hubby are in Canada for the weekend now so Ihave about 3 quiet days...except for some appointments tomorrow (counseling in the AM, Stupid dumb annoying dentist in pm to refit a crown, Pt after that..) I hope I don't fall asleep in the car as that is my prime snoozing time.

Accupunture was awesome today. She put a TENS unit on the pelvic needles so I had some electrical stim..She puts warm rocks on the pelvic area, quiet music, eye pillow with lavedar, warm sheets.....ahhhhh...except for the occasional poke that zaps too hard it was heaven on earth. I was out before the last needle was in. ( takes her about 10 minutes to get them all in) She did say I am much quieter than I used to be and I now sleep. ( Her goal was always to get me to sleep in the past when I'd visit her for migraines...nope, she'd come in, I'd be wiggling and squirming...now I just want to left alone!)
Managed to find all the needles fine today..(no hunting in the pelvic region for the lone needle that was lost.)

'nough ramblin' eh? Thanks for the reply..:) Nice to have buddies to chat with who understand this stuff.

bye-t

[MakinIT]

Hey Julie

My best friend lives in Clearwater...When I visit her (5 times) we always go to the Palm Pavilion on Clearwater Beach...Makes the most AWESOME INCREDIBLE Pina Colodas. I don't even like em but our first stop when I visit is there first, even before we hit her house (Uh..prior IC...I don't think I can drink 'em now)

Anyway...Have you ever imbibed there? If so, please tell me..If not, you have to go!!!!!!!!!!! (OH...they have those tacky whatdaya call em....cabanas...you can watch all the fat and old tourists and pirate ship go by as you sip your sand infested drink....We only did that once, we are fast learners) I don't get the wrinkly, tanned old fat guys in speedos (Whooooooo, nellie, hold me back) I always wonder how they kept the sand from sliding down their rear split. Yet they smile. and flirt. "sigh"...she's coming to visit me this time, 1/cause its been awhile since she's been home and she misses the mountains and Fir tree smell 2/ cause I'm scared to fly with my IC.

have a nice evening Julie.......

Tracey

[MakinIT]

Rhonda, I just reread your last message in this thread

why do I feel like y'all think I'm eating some nasty diet? I am a good little girl who really just can't tolerate much more than toast, hubby's special oatmeal, water, veggies (occasionally) blueberries and pears. HONESTLY...Do you all know HOW MUCH I want even some Orange Juice? (Wow....talk about subliminal messaging...I just saw a stupid Orange Juice commercial, ) I am the blah of the blah, simply because nothing sounds good. :blah: And I don't even want to discuss coffee or that 24 hour Starbucks 3 blocks from my house is getting my pajama butt (complete with stand up hair) visiting it. (OHHH...I miss my coffee soooo much) I do realize they have to come up something. I was kinda excited today. The PORTLAND QUARTERLY magazine came out today. One of their articles was on the top 190 docs in the medical field in the PDX area and my urologist was listed as one of the top 5 in the area. I was happy to see that, but not surprised...She actually calls me back at 10:00 at night and will spend 1/2 an hour on the phone with me answering questions and trying to settle me down when I hurt. I did run into her at the coffee stand in the hospital one day...I looked sheepish but was ordering tea. She was very funny. Actually sniffed my tea before SHE ordered a double latte. (I could hear her voice in line so I was very careful about what I ordered!!) She told me it was a good thing I was getting tea or she was going to throw away my drink. I mentioned her frequent flyer card with her coffee and she just smiled and said " I don't have the freaky bladder". phoeey.

Anyhow, I'm sleepy now but that's nuthin new. I went to lay down at around 3:30 this afternoon and didn't wake up until 6:00, staggered to the couch and dozed until 9:00pm (talk about seeing wierd stuff when you wake up slightly...basketball game, then different sci fi stuff my father in law was watching) My kids and hubby are in Canada until Sunday so it is quiet. Think I'll sleep in alllmorning tomorrow before I start laundry...what a treat.

thanks for keeping me on track y'all. It'd sure be nice to get together with you all, down some prerelief, then have some Margaritas,eh? We can kick out all the "normal Bladder people" (Hereafter known as NBP's) from the bathrooms as the drinks hit us...(I can just visualize this meeting, nothing but a large group of women constantly excusing themselves to pee.....pretty funny, in a sad sorta way!)

Take care Everyone! (and Rhonda...I'm just flicking you stuff....I'm just trying to figure out where I'm getting a rep of nasty food habits) wow...blabbing tonight, again....Really, I don't'talk this much....Writing is my favorite form of communication.

Tracey

[ICNDonna]

Gosh! You can drink tea? Tea is worse than coffee for me.

Donna

[MakinIT]

It's Tazo's Calm tea.....think it's mostly just chamollie..(uh...spelling) I can't drink that black or breakfast teas...ouch.

I'm going to have to clarify reallll good on this thing. BTW...did you buy the "men of Junction City" calendar? I wonder if I know any of those guys (I used to party with alot folks from JC in the late 80's when I was in college) I think I'd be scared tosee some of those guys in their "nearly nude" look...most had a beer belly in their early 20's. :lmao: I'd love to get one to send to my sister in law (who was raised in JC) and now lives in Canada....(it's her 40th birthday today...that's where my family is)

Anyway...so my teas are no darker than my pee color is...(Gross...that was a bit too descriptive even for me...but, since Y'all are on my butt about my diet....just kidding...)

Tracey

[tigger_gal]

lmao cathy... an all out assult on your diet... that was pretty funny....
Brat

[MakinIT]

Ok...I'm done wid chattin about my diet (at least fer now) ...geez..gimme a break. I gotta go ...pooped..I'll chat whichall later.
You guys are my life savers...I mean that sincerely...Tracey

[ICNDonna]

Yes, MakinIT, I do know some of the calendar guys --- and the calendar is very funny! If you want to see the entire calendar, they have a web site --- if you'd like the site, send me an email. Those guys made a bundle for the schools. They're planning a new one this year from Junction City and they're taking applications for those who'd like to be in the calendar --- and no, I'm not planning to apply. :)

Hugs,
Donna
donna@ic-network.com

[MakinIT]

Hi Donna:

I will send you an e-mail to access that website, to look at it----I may have to forward it tonight to my sister in law because my husband (who grew there too) is there with her as is their mother!!!

That is so Funny..I can't wait to see..I hope they will be some folks they know.

[Julie Smith]

T,

Please send me info on calendar.

Thanks a lot.

What's going on with your health these days? I hope your'e feeling well. I'm seeing dr. next week. and having second nerve block. Unfortunately seem to be going down hill since procedure and am really bummmmmed out.

Keep me posted on you, Thanks,
Julie:kiss: :pray: :angel: :hi:

[ICNDonna]

The calendar is sold out now, but the web site is still up at http://www.grangecalendar.com

Donna

[MakinIT]

Ok Donna: sending the website to my sister in law who grew up in JC and letting my hubby see it...he also grew up there. Too funny...they are both in their 40's now so they may know some of these brave souls.

Julie: I'm hanging in their...Docs are trying to get authorization from insurance for a nuerostimulator for pain. They took me off my Migraine meds (topamax) acouple of weeks ago, and my migraines are coming back. Very frustrating as the topamax is soo.......well.....makes me dopier than any other med I've been on and the last two weeks my thinking has been clear. But, I've had to give myself two shots in past week, my migraines have been so bad. so, I'm going to have to go back on,unless they stop. I see my GP in a week so we'll see how I'm doing.

Thanks for asking...and how are you? How's Tampa? My friend says the weather is getting hot...we are in a beautiful weather period here...about 70 degrees and clear skies. so,I like it....My flowers are gorgeous that my mother in law and hubby planted a month ago..all sorts of pinks, purples, whites, under my pine tree.

Talk to you later.
Tracey

[Julie Smith]

Hey Tracey!!!!!!

I've meant to write you back, but I had to run and look at the names of my migraine meds, so rather than wait more I'll just say hi now. Funny about what you said about be dopey, cuz I'm so dopey. I was out for about an hr. shopping just to get out w/ my friend being the chauf. and I could hear myself slurring like Ozzy, only worse, big time. My friend kept looking at me and since I could hear myself I just looked back at her and laughed! We both said thank God I wasn't driving. Oh, she's a really good friend or I'd be so embarrassed. That's the first time that ever happenned to me. It's happens on the phone all the time.

This week I think my pain dr. recommended some of the same procedures yours did. He said there's a lot out there, a lot out of state, yeah great!!! lots of reading to do and a few tapes to watch.

ok, later.........
j:hi: :pray: :thumbsup: